MS, CCSVI, Liberation Surgery & Me

The Impact of Mobility On The Quality of Life and Self Esteem

2012-01-18T19:56:00.000-08:00

People with mobility and health issues wil "get" me when I talk about this stuff but other people who have been lucky enough to not have to deal with this may not. To understand me a bit more easily, here is my condensed background history:

In 2000 I was a fairly young, single mother of three very young children and I was diagnosed with so called MS. My biggest fear was that I would lose the use of my legs forever. (This fear led me to the regrettable decision to take Copaxone.)It also led me to create a goal to rehabilitate my legs and hike the West Coast Trail on Vancouver Island. I went on the Swank diet and joined Curves and two years later, me, my two young boys and several friends did it. My legs were not 100% even after 2 years of working extremely hard to get them back in shape. Maintaining my mobility and quality of life has always been a constant battle. I was told by my neuro that my leg problem was just part and parcel of so called MS. He didn't know how the disease would progress and he didn't know if the drugs would help. Nobody had any concrete answers.

Living with the constant fear of the unkown SUCKS! For a few years my condition stabilized and I beleived I was "managing" my so called MS. In hindsight, Im pretty certain that Copaxone did not help me back then. I beleive it was the diet and excercise that kept me healthier. From everything I have learned in the last couple years about so called MS and the Disease modifying drugs, I am more inclined to beleive that I was just in a natural remission (the nature of the beast).

Without going into too much detail, over the next few years, my health started to decline despite my healthier lifestyle and Copaxone. I stopped taking Copaxone once I was convinced by my research that it did little more than placebo effect. I was convinced it was actually making me sicker. The doctors had no answers and their only solution was more useless and harmful drugs. I was in what I called "Free Fall Mode" at that point. I had been under the illusion that diet and drugs were helping me manage my symptoms and that I was winning. Reality gave me a huge slap in the face and I was extremely scared. My biggest fear of becoming an invalid and having my family become my caretakers was looming on the horizon. Depression set in. I spent many hours planning on how I would euthanize myself to save me and my family the humiliation and the painful drudgery.

FEAR of the unkown. FEAR of a slow, painful death. ANGER that there is no cure. ANGER that I am losing my independence. SHAME that I can't be a "whole person", a wife, a mother. GUILT that my sickness was holding back my huband and children. GUILT that I may have passed on this disease to my kids. TERROR in the knowledge that my sickness is just going to get worse.

With all this mayhem going on in my brain I wanted to scream when I heard someone say "But you dont look sick." Or "Your MS seems to be the good kind." Or "Keep positive."

WHAT THE FUCK???? Note to non sick people: Sometimes it's better to just shut the fuck up.

So dealing with this mentality for years had a hugely negative impact on my life and my family's lives. I never had the highest self esteem to begin with, so add this chaos to the mix and you've got a pretty sad cocktail. I tried to help myself by setting goals and looking for the positives but year after year of being pummeled physically and emotionally was soul sucking. The reality was that my life was spiraling down, out of control. I use to laugh and tell myself that I must have been a horribly bad person in my last life to be reincarnated into this one. I would also tell myself to suck it up because there were people who were worse off than me. These were the "mental band aides" that only helped a little bit, unfortunately. The neuros and Doctors would only offer drugs and give me that "I am sorry but you're fucked" look as they chased me out of their office because I refused their drugs. I had no more positive things to plan for in my future. Hope was a dirty, four letter word. I knew I was fucked.

In 2010 my hope was restored! I heard about Dr. Zamboni's work in CCSVI. I researched this information for months before deciding to try it. I was getting sicker and sicker so I figured I had nothing to lose and everything to gain. I flew to Poland to Euromedic and had the angioplasty, or venoplasty as some call it. My so called MS symptoms went away-except for my legs. They got better but not 100%. I was still ecstatic!!! I was still able to walk. I couldn't run or hike anymore but at least I could walk. I was totally cool with that! I had rehabilitated my legs before so maybe I could do it again. I could look to the future and plan holidays and think about gowing old with my husband, children and grandchildren.

Over the next year my legs were getting weaker, slowly but surely. I figured I might be re-stenosing. None of my other symptoms came back, though. My legs got so bad that I was using a WalkAide" machine and a cane and barely able to hobble around for short distances. All those negative emotions started to raise thier ugly heads again. Was a wheelchair on my horizon?? Would my husband leave me? Why would anyone want me? I saw the look of fear and pitty in stranger's eyes when I was out on the street. I couldn't bear to see it in they eyes of my loved ones. I would cling to my husband's arm when we went out anywhere and I could only plan to go out when I knew he could go with me. I was sad and angry that I would never hike again. I was terrified that I would be in a wheelchair shortly. My self worth was at an all time low.

Fear, anger and shame are not always negative. They can motivate. These emotions kicked my ass into finding a solution for my leg problems. I found out I had venous insufficiency in both my my legs from bad valves! I had a vein ablation treatment that basically burns out the the useless saphenous veins. I am now in the process of rehabilitating my legs again. I started out with my doubts that the treatment would improve my walking but I am geetting stronger and my walking is improving! My sense of self worth has increased one hundred fold! I haven't used the cane or needed the WalkAide in months! I don't have to go out with my husband and cling to his arm anymore either! Yesterday I spent the whole day in the busy city, by myself, walking for hours. I had my moments of fear and doubt when my legs would fatigue and I couldnt find my bus. I wanted to cry at one point but I was able to tell myself that I have come so far and I AM GETTING BETTER and it's only a matter of time and hard work before I WILL HIKE AGAIN!

Funny how things have gone full circle for me. Twelve years ago I was just diagnosed with so called MS and working at rehabilitating my legs. Today I am dealing with the cause of that so called diagnosis and working at rehabiltating my legs once again! Why did I write this? I want people with health issues to know they are not alone and I want the "healthy" people to get a glimpse of what we go through mentally, not just physically in our fight. I want Doctors and neuros to take note and realize that when they diagnose us we beleive them. When they give us drugs we trust them. I was told my leg problems were so called MS for years! If I would have listened to that I would be in a wheelchair right now!

If it weren't for my sense of hunmour and me telling myself that this was a valuable life experience I would probably be insane. I am hoping-yes I have HOPE! It is no longer a dirty, four letter word! I am hoping to hike soon and maybe go on a backpacking trip because I never could bring myself to throw out or give away my backpack. If I did, I feared it was giving up, and I would never hike again.

Am I a stronger person for experiencing all this? Probably. But at what cost? I would NEVER wish this on anyone. (Well- maybe a certain neuro or two) I am planning on getting on with my life and putting the last twelve years of pain, fear, anger and shame behind me. Sift out the lessons and good times, brush myself off and go forward.

January 9, 2012 Post Leg Vein Ablation and Rehab Update

2012-01-09T03:21:00.000-08:00

Since my ablation in November my legs have improved on a daily basis. I started working out with a personal trainer 2 X per week for 1.5 hours per session. It's a total body workout using machines and free weights with a focus on the muscles in the legs and glutes that we use to walk. In the beginning, the workouts kicked my ass! I could barely walk home afterward and was useless the rest of the evening until I fell exhausted into bed around 9pm. This occurred for the first couple weeks then my endurance improved! As a result of the workouts my legs were getting stronger and I was able to walk longer before my legs fatigued and I could take longer strides! EXCITING!!! I did hurt my left knee because my right leg is weaker and I baby it and overwork the left leg and knee. I also have lower back pain when I sleep and my feet are bruised and sore and I even have a lump on the tendon that runs through my left arch. (You can see this tendon when you flex your big toe)

WOW! SO I went to physio today at AFTC and I found out my gait is alright!!! My problem is my muscles need building and strengthening now and I push myself to walk faster and longer than I should. My strides are too long. Thus I have hurt my left knee. He tested my legs and gave me some treatments and exercises to do 5 X a week at home along with treadmill. I am also going to up my workouts with personal trainer to 3 X per week. My goal is be able to hike the Dragons Back trail by spring!It's amazing once you take neuros and so called MS out of the equation!!! I am going to rehab my legs and I WILL HIKE AGAIN!!!!

Post Leg Vein Ablation Update Nov. 11/11

2011-11-10T22:03:00.000-08:00

On Nov. 02/11 I had bilateral (both legs) vein ablation. I was in the hospital for the procedure and received general anesthesia. The surgery was under 2 hours in duration. I had a bit of pain right after and received a non-opiate pain pill. I was fine after that! No pain at all!! I received some minor bruising on my legs and a tiny incision on each calf where the catheter was inserted. My two Dr's were wonderful and the nursing staff was extremely attentive. I noticed a bit of improvement post surgery but nothing earth shattering. My thighs and calves and feet all felt like heavy concrete before my ablation and afterwards (1 day) I noticed that the thighs and calves in both legs were much lighter feeling, the left foot also was lighter. The right foot still felt like I was wearing concrete shoes. The numbness and tingling in both feet and calves seemed to absent and I havent had any pain or swelling from the surgery. I do have some new, post op numbness in my right shin. The Dr's warned me this may occur but in the scheme of things I've had to deal with, this is but a trifle and may go away on it's own.

One thing I did notice was anesthesia hangover!!! OY!!! I would get so mind and body fatigued, about mid day, that I felt like my batteries were drained! I started drinking lots of coconut water and it really helped!! It's like Mother Nature's gator aide. When I went walking the dogs my right leg still felt weaker and heavy when it got fatigued and it fatigued much faster than the left. (as per usual) I was happy for the benefit I got from surgery but still was a bit bummed that my right leg wasnt much better.

I dont want to jinx myself but for the last 2 days, (Nov 9,10), there has been a change in my right leg. The concrete shoe is gone and a knife in my calf muscle, just below the back of the knee has replaced it! You laugh! I laughed too!! But I thought this was a good thing!!! It felt like a charlie horse so I assumed my calf muscle and peronneal nerve wer finally getting proper blood flow and waking up. Last night when I was walking the dogs at bedtime, the knife was gone and I was walking normally for the first time in years. Now when I say normally, you have to understand what that means to me! I felt like both my legs were normal feeling. No concrete heaviness, no knife etc. It felt amazing!!! My husband noticed that I wasnt really walking "normally" in the true sense of the word. He said my ankles would wobble a bit and step was a bit wobbley, even though I was able to make longer, fluid strides. Today on my walks I have been practicing the heel toe mantra as I walk. It's like I have to re train my brain and legs again! I noticed that I have improved stamina in both legs but practicing the heel toe walk, my legs fatigue a bit quicker.

I am going to start some self directed physio and rehab in the gym once my 2 weeks post op is done and I can remove these lovely compression knee highs. I do not know if I have permanent nerve damage or foot drop and would like a professional diagnosis. All these years I was told that my walking problem was "MS" and nobody looked any further. If I still lived in Canada I doubt that I would have gotten treatment for my venous insufficiency of my legs due to the negative bias against CCSVI patients. Even here, in Hong Kong, I ran across a UK Dr. who all but crawled out of his skin and lied to my face so he could justify not performing the vein ablation on my legs. I made the mistake of telling him I had undergone CCSVI treatment and he was, unfortunately, one of those ignorant haters. Dare I name the mann? Suffice to say I will never go back to him!!!

A Cautionary Moment

2011-09-07T19:29:00.000-07:00

After my recent posts about my leg vein issues and treatment with Daflon a lot of people are asking where they can get it. While Daflon is readily available for sale on line, without an RX, everyone should first be checked for leg vein problems like insufficiency and DVT (deep vein thrombosis
You should always check with your Dr. before starting any new meds or supplements as some drugs and supplements mixed together can be harmful.I am not a health care professional. My blog and the information contained within is about my personal health experiences.

Update On My Leg Vein Ablation Quest

2011-09-01T21:16:00.000-07:00

Today is one week since I first went to see the general surgeon about my leg veins. At that appointment I told him that I had recently underwent CCSVI treatment and a Doppler of my legs that showed venous insufficiency. He had not heard of CCSVI so didn't want to jump into vein ablation treatment before he knew what my whole issues were. He said to come back and see him in a week while he researches CCSVI. Meantime he gave a prescription for daflon 500 CLICK HERE I didn't know what it was as I had never heard of it. That night I took 2 pills at dinnertime. I didn't notice anything different. The next day I took 2 pills with brunch and WHAMO! My legs werent heavy anymore and I could walk faster and had more stamina and didn't need my cane!! I also noted that colours were more vivid and everything in general seemed to be more 3D like. It was BIZARRE!!! A good kind of bizarre, though.

So for the last week I have been taking daflon: two pills with breakfast and two pills with dinner. It is not a cure all but it certainly helped! This morning I went back to see the surgeon. He found out that CCSVI is related to the central nervous system and so the leg vein issue was unrelated. He said he recommends vein ablation treatment for me!!! I told him how the daflon affected me, especially the part about the vision and he said that was good because it might be helping my CCSVI issues and he wants me to stay on the daflon! I am now waiting for a phone call to find out where and when my ablation is. It's been a long, long road to this point! 10 years I have suffered with these leg problems and was told it was just MS. 10 years!!! What a crying shame! The past is the past, however. Now I can see light at the end of the tunnel and it's GLORIOUS!

My Search For Answers

2011-08-16T23:34:00.000-07:00

For quite some time now I have been pondering why all my so called MS symptoms went away after my angioplasty in 2010 but my legs never got 100% better. In fact, over time, since my CCSVI treatment, my legs have been getting progressively worse. My symptoms: difficulty walking, heaviness, swelling, pain, numbness and feet turning blue. I speculated it might be because I had a membrane growing inside my left jugular stent that was occluding blood flow but I figured it was more than that. I have thought that because we are born with venous malformations of the central nervous system what is stopping us from having other venous malformations throughout our body? I had also heard that the azygos, iliac and renal veins can play a part in lower body mobility. When I was treated in Poland they only looked at my azygos and jugulars. I decided to look into getting those other veins looked at along with seeing about the membrane in my stent.

I did a lot of research before deciding to go Vascular Access Center in Seattle, Washington on July 28, 2011 with Dr. McGuckin. Why didnt I go back to Poland? I really would have loved to, as I trust Dr's Simka and Ludyga implicitly, but Euromedic doesnt look at the renals or iliac. The findings from VAC were left iliac 50% stenosed, right iliac normal, left renal 50% stenosed, right renal normal, My azygos had a tight web like stenosis and was 80% blocked after cutting out the webbing the flow was still blocked so they put a stent. The membrane in my left jugular was cut out and blood flow was returned. My right jugular had restenosed 50% and was ballooned also.

My legs did not get any better after treatment, unfortunately, so I got a referral for a Doppler sonagram in Salem, Oregon while I was down there visiting my Mom. EUREKA! Chronic venous insufficiency in both legs! Ever since I was DX'd with MS I was told my leg problems were MS. NOT TRUE! I am back home now and plan on getting referred to a vein specialist. From what I understand, it looks like vein ablation treatment will remedy my problem. This is the same treatment they use for varicose veins. click here

I went into all of this CCSVI stuff for answers and closure. Instead I am faced with hundreds of more questions. This new paradigm about so called MS is just in the beginning stages and we are the guinea pigs. There are no definitive answers-YET. I will be surprised if it happens in my lifetime. Most IR's are just looking at the central nervous system veins and I know it's much bigger than that. There isn't enough sharing of information between the clinics that are doing the treatments and studies. Knowledge can be attained through trial and error and by covering up errors we will not learn from others mistakes, unfortunately.

I now, no longer believe in MS. I know I have venous issues throughout my body and not some auto immune disorder. I still dont have all the puzzle pieces but I certainly am further ahead then when I was blithely trusting my neurologist.

May 27, 2011 My Dream of Running

2011-05-26T16:13:00.000-07:00

The CCSVI treatment took all my symptoms away but I was left with weakness in my right leg. It has been one year since my angioplasty and despite going to physio, the gym and trying to eat healthy I am still unable to run. (This was a goal of mine: to be able to run down the beach with my dogs. I have attained the beach part as Im living in Hong Kong now and loving it. Something I could never have done prior to my treatment due to the heat) Besides wanting to run on the beach I had aspirations of hiking the miles and miles of endlessly gorgeous trails on some of the islands but I have not even been able to do that either)I always understood foot drop to be more pronounced, i.e. causing a person to drag the foot and/or limp. This is partly correct but I have recently learned that foot drop also includes the problem I am having now. This is a nerve issue and no amount of exercise or physio or diet is going to change that, unfortunately. The other problem is that because of the weakness in my right leg I rely on my left leg more and Im wearing out my left knee.

A friend of mine suggested trying a "Walkaide System". I Googled it and it's a pricey unit: about $4,300.00CAD. I luckily found a used unit on EBay for under a grand and I'm currently waiting to receive it. I have to go to a WalkAide distributor to have it fitted to me once it arrives. Basically its a plastic and fabric band that fits around the upper part of the calf just below the knee. Electrodes stimulate the nerve that is currently not getting the message from my brain to move. I have read that this stimulation can lead to rehabilitation of the nerve. So I still have hope to be able to hike. YAAY!!

Abstract
Foot drop is the inability to voluntarily dorsiflex the ankle during the swing phase of gait. Foot drop decreases gait quality, limits mobility, increases fall risk, and greatly increases energy expenditure during walking. Traditionally, foot drop is treated with passive dorsiflexion support by an ankle foot orthosis (AFO) but today, functional electrical stimulation (FES) devices are available to promote comfortable, effective active dorsiflexion during gait for patients with central nervous system (CNS) causes of foot drop. The WalkAide® FES System’s unique control system, with tilt sensors to trigger electrical stimulation during the swing phase, can help normalize gait and thus optimise safety, cosmesis and energy efficiency in people with stroke, multiple sclerosis, cerebral palsy and a wide range of other CNS disorders.

My Walkaide should be arriving any day now and then I will go and get it fitted. I will post periodic updates for anyone who is interested in my progress. Happy trails to you!

COURAGE vs. CULT

2011-04-05T21:40:00.000-07:00

Without belittling the courage with which men have died, we should not forget those acts of courage with which men have lived. The courage of life is often a less dramatic spectacle than the courage of a final moment; but it is no less a magnificent mixture of triumph and tragedy. A man does what he must—in spite of personal consequences, in spite of obstacles and dangers and pressures—and that is the basis of all human morality. In whatever arena of life one may meet the challenge of courage, whatever may be the sacrifices he faces if he follows his conscience—the loss of his friends, his fortune, his contentment, even the esteem of his fellow men—each man must decide for himself the course he will follow. The stories of past courage can define that ingredient—they can teach, they can offer hope, they can provide inspiration. But they cannot supply courage itself. For this each man must look into his own soul.~ John F. Kennedy

Recently an article by an MS blogger named Trevis pointed fingers at CCSVI activists for crashing an MS Walk and showing off their improved health from the CCSVI treatment. I saw clips on the news and I thought it was brilliant but apparently some folks who are not on the CCSVI bandwagon felt like they were being attacked and belittled for not believing in the treatments benefits. I know one of the ladies who was part of this publicity stunt and I can assure you that was not her intention or any of the others involved either. They simply wanted to show the world the benefits they obtained from treatment and mock the MS Society for their laughable contributions to research and treatment of blocked veins.

What struck me during this debacle was Trevis, who apparently has MS, would rather sit on the sidelines and wait until he has been handed concrete proof that MS and CCSVI are linked. Where is the proof that MS is auto immune. The reason I chose to be treated was because my health was declining and I could not bear being disabled to the point where my quality of life was severely impaired. I didn`t just jump into having the treatment either. I dont recommend anyone doing that. I did massive amounts of research for months on end and I was still not convinced 100% until after I had the treatment and started noticing the benefits. Perhaps Trevis is at a point in his life and disease where he can afford to wait and see. I have no qualms with that. Our lives and our health are very personal and we should all have the choice to be treated or not. What I wonder sometimes, though, is fear the real reason people like Trevis want to cling to their disease. Is the relationship between MS and the patient like the kidnapper and the victim. After spending so much time together a bond forms between them.

I have always denied my limitations. When someone says `you can`t do that.`I take it as a personal challenge and endeavor to show them I certainly can and will. Perhaps for some people, fear of the disease must be greater than fear of the unknown treatment. Is it a sign of a weak mind to want to be told what to do by the neurologists. I think not. For years the neuros were all we had. They were our life line and they did the best for us that they could based on the current understanding of MS and the treatments available. I get that. Now, however, a new paradigm in the cause and treatment of MS is emerging and not only Doctors are balking at it but MS patients too! Sometimes I cynically think that this is all part of natural selection and the stronger, more adaptable species will prevail. The people that refuse to leave the burning building will perish in the flames and the ones that got out will live.

I applaud the group in Seattle who staged that publicity stunt. They have overcome their fear of the unknown. They have made the conscious choice to throw off the shackles of MS and break free from their kidnapper. To me this is one hell of a courageous act and I am proud to be a CCSVI activist.

Disclaimers For Dummies

2011-03-07T08:57:00.000-08:00

Yesterday I got into a deep discussion with another "Liberati" and fellow CCSVI advocate about how some people are just watching the before and after CCSVI treatment videos and jumping on a plane and going for the treatment with the overly high expectations of being able to jump or walk or run again. My friend said it was caused by all the folks who have posted before and after videos and that we should cease doing this. I disagree. We started posting before and after videos to prove to the world that we were not lying about our recoveries. There are no neuros in Canada that are documenting us before and after treatment so we are doing it ourselves. So should we stop doing this because a few folks cant manage their expectations and are too lazy to research CCSVI thoroughly before going for treatment? I don't think so.

When I first went to get treated in March 2010 nobody had really thought to do before and after videos but I had done all the research. I started studying anything CCSVI right after Avis Favaro's TV news show on Dr. Zamboni. Let me tell you about my mind set back then: I was RRMS but had been getting sicker and sicker for the last 2 years and was moving into SPMS. I was depressed and desperate because I knew my copaxone was not working. My legs were giving out on me and I knew it was just a matter of time before I was in a wheelchair. I knew that my health was on a down slide and there was nothing to help me. NOTHING. I was desperate. When I saw this news show about the treatment I wanted to believe it with all my being but I wouldnt allow myself to believe it until I knew more. I mentally couldn't afford to jump into this with both feet for fear that it turned out to be a dead end or worse yet- snake oil. This is when I started researching eight to ten hours a day, seven days a week for months on end.

The fact that people are just taking the word of some You Tube video and going to have the treatment is ludicrous! This treatment is still in the research stages. There are no guarantees that this does anything for MS. Even the Doctors that perform it will tell you the same thing. SO why did I even bother going to try? Based on the scientific evidence and anecdotal evidence of the first Liberati in Italy and from Stanford I took a calculated chance. I figured that getting my blocked veins fixed was a good thing no matter what and if I got some relief from my MS symptoms then bonus. I went to Poland with very low expectations to protect my mental well being. If I had gone with expectations of running right after I think I would have cut myself! I am still not running and my legs are far from perfect.

For all those folks who are considering doing before and after videos, my advice is go for it! You might want to mention that there is no guarantee that others will get the same results you did because there are no guarantees with experimental treatments and getting your veins unblocked is just part of the whole health equation. Diet, physio and exercise should also be undertaken. This will sound harsh but I have no pity for folks who do not use their heads before undertaking something like this. I have empathy for your desperation, because I was desperate too, but that is no excuse.

Using Greed To Our Benefit

2011-03-03T11:45:00.000-08:00

To steal the words of a fellow blogger and CCSVI advocate Marcel Gignac: "I tell the truth about Multiple Sclerosis. Every MS Specialist became one by studying books written by doctors that interpreted what patients told them. Therefore, the only expert can be the patient. I AM AN MS EXPERT."

If you have MS then you are also an expert. I am not, however an expert on CCSVI by any means. To date, there is not one being on this planet that can make that claim. I have studied CCSVI research and anecdotal evidence since I first heard of Dr. Zamboni back in November 2009.I can tell you everything about my treatment and my subsequent improved health and well being. My belief in the benefits of this treatment spurred me to reach out to other MS patients wanting to know more about CCSVI treatments and where to get them. When I was first treated almost a year ago on March 30, 2010 in Katowice, Poland there weren't many other clinics performing this treatment so my options were limited. I do not regret going to Poland and I am happy to report that the balloon angioplasty and stent implantation in my jugulars has been a success without complications of re-stenosis, thrombosis, clots or stent migration. To the trained, blinder wearing neurological mind, I am enjoying a remission.

Currently,the field of CCSVI research and treatment goes hand in hand. While we are being treated we are also the subjects of the ongoing research. This is the double edged sword that we are cut by if we choose to be treated at this time. Dr's cant tell us what to expect after treatment. There are no guarentees that it helps MS. The only thing we do know is that poor or complete lack of proper venous drainage from the brain is unhealthy! At the minimum this treatment alleviates that issue. My self appointed job as a CCSVI advocate would be all roses if this was my only obstacle. Initially, when I first started writing my blog I naively believed that clots, stents, thrombosis and re-stenosis were the only enemy. The real and one true foe of CCSVI treatment in Canada is GREED.

Greed will never be defeated and we exhaust our resources when we try. The US has used greed to their advantage because their medical system allows private practices to perform the treatments and as more American Interventional Radiologists discover this new and extremely lucrative (Cha!Ching!) field of CCSVI treatment, more clinics will pop up. This is where it gets very grey for us Canadians, however. How does a person know if the US clinic really knows what they are doing? Any clinic will read off it's credentials to you and assure you they are experts. What is really the truth and what is hyperbole? Do we really know? We can listen to testimonials of other patients and hope. The additional obstacle to this leap of faith is a huge price tag attached and the possibility of having to undergo more expensive treatments due to re-stenosis or under-treatment. The other side of the coin is a lack of after care. If you live in Ontario or Alberta you can be helped by a panel of government appointed neurological experts. Like I said, lack of after care.

Unfortunately, this is all we have as Canadians with MS and CCSVI dealing from within a socialistic nightmare of a health system. As an MS expert I say this is absolutely unacceptable and I demand better of our country for myself and all it's people now and for the generations to come. Perhaps the time has come for Canada to adopt the two tiered health care system? It would allow for private practice Dr's to perform CCSVI treatment in our own country. Treatment would lead to proper follow up care. The MS Society would be completely and blissfully out of the CCSVI equation for good.(The proponents of two-tier system argue that it would introduce more flexibility into the system, reducing wait lists and that competition from the private sector would make the public one more efficient.) It is true that many folks cannot afford private care, but we have been raising money to send people to the states and overseas, so why not continue to raise money but have the treatment at home in Canada? You cant win against greed so why not use it to our advantage? I know that many Canadian Dr's are chomping at the bit to start treating CCSVI but are, regrettably, unable to step up.

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My Appology

2011-02-25T07:25:00.000-08:00

Recently I have come to take stock of myself and how I fit in to this whole CCSVI movement. After close inspection of myself and some other CCSVI advocates I see that many of us are driven by either greed or ego or both. Since I am not affiliated with any clinics my reason has to be ego.

I believe there is a very fine line that we advocates must walk lest we lose sight of our original goal of spreading the news about CCSVI treatment. I lost sight of this due to my ego and I apologize. My goal when I first got involved with CCSVI was to help other MS patients get the true information about CCSVI so they could decide if treatment was a viable option for them. Now there are MS patients being paid finders fees and referral fees by treatment clinics. Some patients even volunteer or work at a particular clinic.

We lose our objectivity when we align ourselves with one Dr. or clinic or accept gifts and payment for referrals. I am not saying this is evil. Who works for free? Why do many feel that every person involved with CCSVI should be an altruist? What I am saying is that if we are truly interested in helping other MS pathttp://www.blogger.com/img/blank.gifients make educated, unbiased choices about their MS treatments then we must truly be disconnected from any one Doctor or clinic. Furthermore we should not allow our egos to get in the way, as gratifying as it is helping other people.

I am going to take a step back from the CCSVI arena for awhile, to get a better view of the forest, so to speak. I need time to decide where and how I can best fit in and actually help the movement rather than just boost my ego.

Dr. Arata in Seattle by CCSVI at UBC MS Clinic

2011-02-11T07:59:00.000-08:00

The field of CCSVI treatment is ever changing. This is not surprising given that the theory of a vascular component to MS is so new. Many folks, including myself have been angio'd overseas and various clinics in the US. Some of us have experienced great results while others have not. Dr. Simka from Euromedic Clinic in Poland told me almost a year ago, that the rate for re-stenosis was around 53%. Veins are rubbery and if you liken them to a garden hose, they both have "memory". When you carefully roll up your hose after each use it becomes more difficult the next time to straighten it back out. Veins are similar in that when the balloons are inflated the vein walls stretch but if under inflated, over time, they can return back to their original collapsed state.

I was lucky enough to have to require a stent in my left jugular as my vein refused to stay open, even after numerous balloonings. I believe this is why I am still enjoying an MS symptom free life right now. My blood flow has remained open and flowing consistently. I remember back in the day, when I was just researching CCSVI, before my treatment, and I talked to a few Doctors on the "con angio" side. One such Doctor vehemently argued that if the balloon ruptured the valve the intercranial pressure would be disrupted and our heads would swell up, turn blue and our eyes would pop out of our heads as we died. This would be correct if we were talking about veins in our legs but has been proven incorrect for our brains, thankfully. (You FAIL Rose!)

Lots of patients who were initially treated in the last year have re-stenosed and that is most likely due to under treatment which is no fault of the Doctors, really. This is a new field and a very new treatment. We are the pioneering Doctor's lab rats and they are learning as they go. From everything I have read lately I believe that Dr. Arata's protocols for rupturing the valves and using larger balloons seem to be they key to stopping re-stenosis. Patients that have have re-stenosed are flocking to Dr. Arata now and, knock on wood, so far so good! Below is a posting from CCSVI at UBC MS Clinic that everyone should read if they are thinking of going for treatment or re-treatment. If the clinic you are looking into doesn't follow these protocols you might be disappointed at the results and out a whole lot of money.

MS In A New Light -- CCSVI ~ Dr. Michael Arata presentation January 29, 2011 (Seattle)
by CCSVI at UBC MS Clinic - Information and Support on Wednesday, February 2, 2011 at 12:16am

"Multiple sclerosis is a complication of venous hypertension" ~ Dr. Michael Arata

Dr. Arata wanted to share some of his observations based on one year of treating CCSVI. With over 500 patients now treated at his clinic, Dr. Arata feels there are a few exceptions to the MS - CCSVI connection. Dr. Arata sees flaws in the jugular valves in almost all patients on both sides and believes this causes a form of cerebrospinal venous hypertension. In fact, Dr. Arata thinks CCSVI should more accurately be called CCSVH because of this connection (however, he gives great credit to Dr. Zamboni for being a visionary to come up with this theory in the first place!).

This type of venous hypertension is akin to what happens in the lower body with varicose veins. It is well studied and well documented. However, unlike varicose veins, where removal of the problematic valve would lead to an exacerbation of problems, such as lower limb swelling and pooling of blood, disruption of valves in the upper body can be safely done to reduce cerebrospinal venous hypertension and improve patient outcomes.

The main symptoms addressed by correction of this situation are circulatory in nature, such as sleep disturbance, fatigue, headache, brain fog, impaired brain plasticity, and autonomic nervous system dysfunction. These headaches can occur upon waking and while sleeping and can wake a person up. Plasticity is when a second brain area takes over for a damaged or malfunctioning region in the brain. Unlike some other neurological conditions and brain damaged patients, it has been known for some time that people with MS struggle with brain plasticity. Autonomic symptoms include thermal regulation, cold extremities, and heat sensitivity. I asked the question if unregulated blood pressure would be included in these autonomic symptoms and Dr. Arata agreed. My BP has wild swings without any apparent reason.

Other symptoms commonly associated with MS are more likely to be caused by damage to the nerves themselves and not a direct result of the hypertension. These are the symptoms that take longer to respond to angioplasty and may never improve if the damage is significant enough.

He felt impaired brain plasticity was a complication of end stage venous hypertension (i.e., where the brain can no longer recover from MS attacks and is left with lasting damage). Dr. Arata felt that combined therapy aimed at reducing venous hypertension (CCSVI treatment and valvuplasty) and reducing inflammation (drug therapies and nutritional approaches) is most effective. Dr. Arata is going to integrate Dr. Bill Code’s ideas on the nutritional aspects into his treatment and maintenance recommendations.

Dr. Arata described primary CCSVI, the most common type, is generally a result of malformed valves in the jugular and azygos veins. Primary CCSVI causes venous hypertension of the jugular and azygos veins. The valvular deficits may or may not narrow the vein. What appears to be upstream venous lesions (narrowings) are actually collapsed veins, not stenoses, and should not be ballooned. These are in the mid-jugular region and ballooning in this region just introduces unnecessary venous damage and trauma. According to Dr. Arata, “it’s all about the valve.”

Valve disruption involves valvuplasty involving oversized or cutting balloons. It is difficult to know when the valve has been sufficiently disrupted during a venogram – this must be done visually using experience.

A secondary type of CCSVI is imaged through MRI involves hypoplasia or aplasia of the sinus of the brain. (Hypoplasia is the underdevelopment or incomplete development of the vein; aplasia is defective development or a birth defect.) Treatment is venous stenting of the hypoplastic segments. He described people with half their jugular veins missing. Endovascular reconstruction (i.e., vein grafting or bypass) is extremely challenging at this time and has not been demonstrated to result in successful outcomes in people treated for CCSVI. (Surgical correction and vein replacement is not recommended – if this is needed, you will need to wait for the science and techniques to advance.)

In the azygos, secondary CCSVI can manifest as a compression of the vein between the heart and spine and, in the hemiazygos, against the aorta. Dr. Arata feels stent placements in the azygos are safe. He no longer recommends stents in the jugulars except in rare circumstances.

Secondary CCSVI caused by problems situated at at the craniocervical outlet (base of the skull) is a poorly suited environment for current endovascular techniques.

Dr. Arata echoed Dr. Hewett's earlier comments that a lifelong commitment to our health is necessary when we embark on a program of angioplasty to manage our venous health. When asked if he felt Canadians would be able to access subsequent treatments through our public health system, Dr. Arata actually said he was envious of the situation in Canada. He said Canadians have brought this issue to the attention of their governments and doctors and the media in a way unlike any other country. He is confident the process will result in available treatments in Canada after due diligence is done with studying research and patient outcomes. Even though he stated he felt this would take approximately 5-7 years, he said that is a better situation than currently exists in most other countries. When asked when the US would start addressing this through their media, Dr. Arata was careful to keep his opinions to himself despite someone from the audience calling it a media conspiracy because of the amount of pharmaceutical advertisers.

~ Sandra (with a lot of help from Shannon!

10 Month Post Angio Update

2011-01-10T10:47:00.000-08:00

This post is all about how I am trying to maintain my vascular health and increase my muscular strength by eating right and exercising. I cant stress enough how just getting angio'd for CCSVI is not enough. We all need to take better care of ourselves and I am doing everything I can to help my body heal itself.

I was previously going to the Good Life gym in my neighborhood but I felt I was not getting a good workout on my own and a personal trainer costs $8,000.00. I decided to join Curves again. Years ago, when I was first diagnosed with MS I joined Curves.

Currently, I have been going to Curves 3 times a week for about 4 weeks now. Curves is a women only circuit gym using hydrolic machines to work all the muscle groups in your body. The circuit consists of various machines with recovery area platforms in between each machine. Music plays in the background and every 30 seconds a voice prompts you to move to the next machine or recovery area. You complete the circuit twice and then do your stretches all in 1/2 an hour. Something new to Curves is "Curves Smart" technology. A computer program monitors your strength and weaknesses and adjusts to keep you from plateauing. It's like having a mini personal trainer. I can monitor my strength now and I can actually see that my legs are getting stronger! My body seems to really like the circuit training. I think it is because I am only working a muscle group hard for 30 seconds and then moving on to another group. My legs are getting stronger as I can perform more reps every week!!!

I also wanted to lose some weight and tone up after the last couple years or inactivity played it's toll on my body so I did a 2 week cleanse diet that my curves coach designed for me to help rid me of my sugar cravings. Basically it is just "eating clean." Clean eating involves consuming fresh fruits, veggies and lean meats instead of pre-packaged, refined and processed foods.

Clean Eating Principles
•Eating a mini-meal every two to three hours (5 to 6 small meals per day total) to keep blood sugar level and prevent hunger
•Combining lean proteins and complex carbs at every meal
•Avoiding all over-processed and refined foods (especially sugar, white rice, and white flour)
•Avoiding saturated and trans fat, instead consuming healthy fats
•Avoiding soda and other sugary juices and drinks
•Avoiding high-calorie, zero nutrient foods (i.e., junk food)
•Eating proper portion sizes
•Drinking at least 8 cups of water every day
What Clean Eating is Not
When describing clean eating, it's important to point out what eating clean is not. Clean eating is not a diet, although it is a great way to reduce body fat, lose weight, and keep the weight off. Clean eating is a lifestyle that requires time, commitment, and pre-planning and is not just a way of eating that can accomplish weight loss or overall health just by doing it on the weekends only. Clean eating is not about deprivation, avoiding food groups, counting calories or starvation, but about making healthy food choices and providing the body with the best foods possible.

One thing I have noticed since I started "eating clean almost 2 weeks ago is that even after my angioplasty my legs were still weak and I had some heaviness in my legs that would not go away. Now, for about the last 4 days that heaviness has gone! Im hoping it's going to stay gone and this is not just some short term phenomena. Time will tell, I guess.

Overall I am still feeling great. I haven't bothered getting re-dopplered since my 3 month Doppler as I believe my stent is doing it's job. If I start to feel MS symptoms coming back I will go get checked as that is usually a sign of re-stenosis or clot.

A funny thing occurred last week. I got a message from the Calgary MS Clinic saying they want to schedule my check up with a Dr. Davenport. I was banned from the clinic after an emotionally heated blog post I did involving the clinic's director, Dr. Metz. I had also written my neuro, Dr. Murphy a goodbye letter accompanied with a CD of my lesion covered brain right before I went to Poland for my treatment. I had stopped taking the copaxone about a year prior to that. So is this a clerical mistake? Or do they really want to see me and why? I will go as I want them to see how well I am doing. I know my GP marvels at that when he see me. I also am extremely curious how the lesions on my brain look now. I was told by Dr. Simka that because of my stent, I would have to wait 1 year before having a MRI. Maybe the lesions are going away? If they are will the neuros finally believe that MS may be vascular? Hopefully I will have the answers to these questions soon.

Why Do Some Folks Show NO Improvements After Angioplasty For CCSVI?

2010-12-14T13:17:00.000-08:00

Time and time again I receive letters from folks like this: "Dear Ginger, I had my angio two weeks ago and still no improvements."

This is my response:

Great to hear about your angio. I am sorry you haven’t noticed any immediate improvements but there are no guarantees, unfortunately. When I went to Poland I told myself that if the treatment just stopped my attacks and progression I would be content. If you think about the research around CCSVI and what they have found I am not surprised that many people felt no immediate improvements. Bad or no blood flow was causing a reflux of deoxygenated blood to be forced back up into your brain. Over time this created iron build up which in turn caused inflammation. The inflammation signaled your immune system to go up to your brain and "fix" it. SO then the blood brain barrier jump occurred as the vein walls were weakened in your brain due to the reflux. PRESTO! MS! This all did not happen over night. Why do we all expect to be 100% over night then? I was very lucky to get benefits right away but some didn’t come until months later like my bladder spasms going away. By having the angio you just fixed a major vascular issue in your body! The fact is you may have more blockages throughout your body that they didn’t even look for. BUT you stopped the reflux into your brain. YOU ARE CURED OF CCSVI! Now you need to go to physio religiously. Exercise at the gym at least 3 X a week. You need to drink lots of water every day. Look into increasing your vitamin D intake to 10,000 IU's per day. Go on the Swank MS diet or other MS diets and sleep inclined every night. (Google inclined bed therapy) Don’t expect that by just having angio you will be 100%. Our bodies need help and time to heal themselves. If you truly want to get better then do EVERYTHING possible to help your body. There is also a chance of re-stenosis so getting proper follow up and after care are essential. PS QUIT SMOKING

12 Months Of Hope and Lies

2010-11-11T10:18:00.000-08:00

Today I realized it has been close to one year since I first heard of CCSVI on CTV. I clearly remember my thoughts and feelings like they were yesterday. I also remember hearing that some neuros were saying that CCSVI was only another sham treatment and would soon fade away. It has been twelve months and CCSVI has not died. Close to 4000 MS sufferers, globally, have been treated for blocked veins and the number continues to rise.

CCSVI advocacy groups have popped up all across Canada, largely in part through social media. The MS Society has fumbled themselves into a deep dark corner throughout this entire time. I would have to say that this is one of the largest PR screw ups in history! I cant foresee them pulling out of this debacle unscathed.

After care seems to be a very grey area in Canada. Some Gp's and neuros have been reluctant to offer referrals to vascular specialists when a person returns home from their medical tourism. I have already heard a disturbing story of emergency after care being denied to a young man and his resulting death. I am told Avis Favarro is looking into this story.

The attitude towords CCSVI by the majority of the neurological community has been hostile at best. WHY this is, one can only speculate. Some say they will lose lucrative funding and kick backs from Big Pharma as people choose to go off their ineffective and often dangerous MS drug therapies after having angioplasty. It is true that Big Pharma stands to lose billions. I have often wondered if pharmaceutical companies were allowed to advertise on Canadian TV, CCSVI might not have received the media coverage it has. The US allows Big Pharma to advertise. Every other commercial is an add for some kind of drug. Notice the blackout on US television when it comes to CCSVI. Makes you wonder.

Both Ashton Embry of Direct-MS and Dr. Zamboni has been doing their best to dispel the lies that have been circulating throughout many governments and their health care systems. I laughed out load when each of them wrote to our health care people and point by point shot down their position statement on why we are not allowed to have angio.

Our Canadian Government has been willingly duped by the naysayers into believing that treating an MS sufferer for blocked veins is unethical and dangerous. Any other tax paying Canadian citizen can have angioplasty on their blocked jugulars and it is covered by Provincial Health Care. Kidney dialysis patients suffer from collapsing jugulars as a result of their treatments and they are allowed angio to unblock them. Victims of car and motorcycle collisions also are eligible for angio.

Currently some well meaning politicians have pushed for funding for clinical trials in Canada. The sad truth of the matter is this is just a waste of money and time. Enough research is already going on all around the world. Why would we waste precious time and money like this? The naysayers want to see this happen so they can conduct the studies themselves and prove CCSVI doesn't help MS. This is all just a great big stall tactic that benefits our current health care system. Can you imagine if they okayed scanning and treatment tomorrow? I think our government is scared shitless of what this would do to our already overloaded system. Our current Global Health Care system would fall apart. Time for a better system anyway!

Despite all the roadblocks being thrown at us by naysayers folks are continually opting to have the treatment through medical tourism. On average a person spends around $10,000.00 and that money is not going into our own economy, unfortunately. Although, if we did do the treatment here and had to pay out of pocket for it, estimates of $1,500.00 to $2,000.00 CAD is a more realistic figure for our country. The US is doing the procedure and taking Canadians money. Just think how much money Canada could generate if we offered this treatment too? Just think how many thousands of tax paying MS sufferers could have a shot at a better quality life?

No more trials or studies. CCSVI is a vascular condition. Whether it is related to MS is neither here nor there. Blocked veins are unhealthy. Kidney dialysis patients arent told to rely on their collateral veins when their jugulars collapse. Why are we? It is unethical and inhumane to withhold this treatment from us any longer.

7 Month Post Angio Health Update

2010-10-16T08:49:00.000-07:00

All things considered I have been doing very well since my last update. The last two months I seemed to catch a couple colds and the flu but it didnt exacerbate my (non-existing) base line MS symptoms. I also ended up with a horrible gum infection that oral antibiotic wouldn't eradicate. After about 45 days of three different oral antibiotics I was admitted to "Urgent Care" and given an IV cocktail of antibiotics as they feared I had osteomylitis. (bone infection) I ended up going home with an IV line and being sent to a maxiofacial surgeon. Luckily it was found that I didnt have a bone infection but I did require a root canal. It's been about ten days since the root canal and I was given more oral antibiotics post op. The funny thing is I still have a bright red area on my gums and it is still tender there also, which makes me think the infection is not yet conquered. Guess I'll be calling the dentist on Monday. Geeez!

My concern is that my immune system is screwed up now from all the meds and it's not even winter yet! I still have cold and flu season to survive! I am not certain if my immune system problems are "leftovers" from before I had the angioplasty or just a result of over prescribed antibiotics. Through this whole time, though I was able to work and play with no noticeable exacerbations! If this would have occurred before my treatment I would have had a symptom flare up and been home bound for the duration.

My plan is to try to stabilize my immune system through diet. Years ago, when I was first Dx'd I went on the "MS diet by Dr. Swank. Basically its a zero saturated and trans fat diet so no dairy and no red meat. I tried some of the other diets that are purportedly good for MS patients but I crashed and burned on the gluten free one. I LOVE my bread! I can live without pasta but I crave bread. The only foreseeable problem with the Swank diet for me is the "no red meat" rule. I do not eat a lot of red meat but I do get headaches when I havent had it in awhile. (Strange but true) I also need to watch my red blood cell level as I am already borderline anemic. I did start supplementing with a time release complex vitamin B to help with the anemia problem.

I havent been to physio in over a month as my legs have been feeling really good and strong. I use the stairs at work frequently and am on my feet the whole day and this has really helped me. Im not running yet but Im feeling like I may be able to shop for the thigh high hooker boots with 3 inch heels and dance on a table or two!

Have Angioplasty Advocates Gone Too Far?

2010-10-07T09:16:00.000-07:00

Is our Canadian governments lack of action in treating extreme MS cases, (life threatening), akin to manslaughter? If a Doctor fails to use every avenue possible when treating a patient in a life threatening situation is that not a crime if the patient dies as a result? Or is this some secret form of euthanasia? The question should NEVER be "have the people gone too far?" The question should always be "what has our elected body of officials done for it's people?"

So far only a handful of promises from well meaning politicians in several Provinces have surfaced from the uproar in our Country and it is not enough. Research is all well and good but research is already on going all around the world already. If Canada were to start today what would they base the study on? Anything that would be beneficial is already in the works by Dr.'s Simka, Zivadinov, Weinstock-Guttman, Haake and Hubbard to name a few. Why is a medical procedure being required to withstand trials that, until now, have only been required for new drug therapies?
Why is the true and compelling research around CCSVI being omitted from the information that is being trickled in to our Health minister and politicians? Why is angioplasty in the internal jugular veins already an approved procedure in Canada, and performed every day, but denied to any Canadian with the pre-existing condition of MS? Blocked veins are unhealthy to everybody.

How can our government continue to ignore the pleas of dying individuals like Barb Farrell and Marcel Gignac? I heard on the news several months ago how horrified folks were when there was a car wreck on the side of the road and other drivers didnt bother to stop. This is the exact same scenario except instead of just one person lying there dying its several thousand. When I was in Poland to have my angioplasty I was discussing the plight of Canadian MS'ers with one of my Polish drivers, on the way to Auschwitz, and he shook his head and said "Massacre".

Meanwhile the brain clocks of the roughly 75,000 MS patients in Canada are ticking away and winding down as they run out time while our government chases it's tail. The fury that boils inside me and the tears that run down my face will not defeat me, though. I have joined together with a group of folks who have formed The CCSVI Foundation. We will take up where our Government has failed by helping to fund MS patients out of country angioplasty treatments. www.theccsvifoundation.ca The group has applied for non-profit charity status and we hope to be issuing tax receipts for donations very soon. We have no offices full of cherry wood furniture. Each of our directors operates from their home. None of us draw a salary and all of us are either patients or caregivers. I will personally be selling rubber bracelets for $5.00 each and every cent of the money we raise will go to helping someone get angioplasty. To order bracelets please e mail met: gingermacqueen@shaw.ca

Deciding Where To Go For Angioplasty

2010-09-08T09:55:00.000-07:00

When I went for my angioplasty back in March 2010, Dr. Simka was the only one practicing it at that time. Currently there are close to a dozen place all over the world offering the treatment and many folks add themselves to several waiting lists and go with the first one that calls them. Others choose tropical destinations so they can combine business with pleasure. Neither one of these choices is very sound to base your health on. While this type of angioplasty is minimally invasive and relatively safe there are some points that one should seriously consider before booking your angioplasty.

Thoroughly research the background of the Doctor you are hoping on seeing. Find out how long they have been doing venous angioplasties. Can you obtain medical insurance that will cover you in case complications arise while you are overseas? Does the Doctor do stenting? Do you understand that it is not healthy to have angioplasty repeatedly on your veins? Are you knowledgeable enough about stents to make a decision to get one should the Doctors advise that you need one? Does the Doctor know how to use an arterial stent for a vascular procedure? Are you aware of the possible complications of vascular stenting? If you are receiving disability payments will your insurance company cancel your benefits if they find out about your treatment? If you are going through a medical tourism company, have you checked into how much you could save if you booked it yourself? Have you thoroughly researched the medical tourism company to ensure they are legitimate? Are you mentally prepared that you may not be operable? Have you managed your expectations or are they based mainly on other patient's success stories you have read on the internet?

Some other things to consider are keeping your trip quiet as airlines do have the right to refuse you a seat on their plane if they feel your health is at risk. If they do you will have to get a letter from your doctor specifically stating that you are healthy enough to fly. If you have time constraints and dates that you need to be in a certain place for angioplasty this could really mess things up for you. Another problem that I know of occurred after a patient came home from having the treatment abroad to find that her disability insurance had been canceled due to "no longer fitting the criteria for disability". Did the insurance company find out she went for treatment? Did her neurologist tip the insurance company off? It is better to be safe than sorry and keep your plans private.

I know that I have jokingly compared this angioplasty to getting a tattoo when talking about how minimally invasive it was but it is still a medical procedure, and like a tattoo the final outcome may or may not be what you anticipated but now will be something you will have to live with.

YOGA! YOGA! YOGA!

2010-09-04T09:15:00.000-07:00

Picture John Bellushi in "Animal House" and you will understand the title of this posting. I have gone to 2 yoga classes now and I am loving it! The last class I did concentrated on lower body strength and I thought I wouldn't do so well but I surprised myself! The great thing about my teacher, Robin, is that she gives optional poses depending on your level of skill so you can always participate even if you might not be strong enough to do the advanced pose. There is no sense of failure and I find it so empowering.

Robin always reminds us to listen to our bodies during the poses and if it doesn't feel right to modify the pose until it does. I am working on being able to do a back bend again. I can't remember when I stopped being able to do them but it's been many years! After class I do not feel fatigued at all, either! I feel like my muscles are more limber as any tightness disappears during class. I enjoyed a hot Epsom salts bath afterward and went to bed. BLISS!

You Might Say That Im A Dreamer, But Im Not The Only One...

2010-09-01T08:18:00.000-07:00

Our Federal Government has decided to sit on its hands while MS patients suffer and die despite overwhelming anecdotal and clinical evidence that demonstrates that unblocking our neck veins has definite therapeutic value. Leona Aglukkaq is blindly listening to Dr. Beaudets recommendations to wait. Months ago when Dr. Zivadinov and Dr. Weinstock-Guttman of Buffalos BNAC came to Calgary for a CCSVI presentation on the research they were currently working on, it became all too clear to me that if we wait for the research to be completed, Canada will not be performing angioplasty on MS patients for another decade.

Even if Canadian researchers got the green light from our Government to go ahead with CCSVI studies, I wonder what the research would entail. If they endeavored to duplicate the already ongoing work by Buffalo it would be a waste of our money. The best study that I imagine Canada performing would be to compile a data base of all the MS patients, (which our MS clinics already have), and by working with the angioplasty Dr.s abroad, compile before and after data on each patient. This type of study would be extremely cost effective as the preliminary medical history of each MS patient is already documented. The biggest hurdle would be to get our neurologists to work with the interventional radiologists and vascular surgeons by sharing information.

2010-08-13T09:57:00.001-07:00

My Rebuttal to Paula Simon's Ridiculously Ignorant Article on Provincial Funding for CCSVI Studies and Treatment
by Ginger MacQueen on Thursday, August 12, 2010 at 2:21pm

Multiple sclerosis is a terrifying, debilitating, mysterious disease. Alberta and Saskatchewan have some of the highest MS rates in Canada -- and Canada has one of the highest rates in the world.

So it's understandable that many Canadians were filled with hope and excitement when Italian physician Paolo Zamboni announced last fall he had found a revolutionary new treatment for MS.

Although scientists have, for years, accepted that MS is an autoimmune disease that attacks the central nervous system, Zamboni, a vascular surgeon, declared he'd discovered an entirely new cause, which he creatively dubbed "chronic cerebrospinal venous insufficiency" or CCSVI.

Zamboni claims MS is caused by a buildup of iron deposits in the veins leading to the brain. He further claims that unblocking the veins, using balloon angioplasty and stents, improved cranial blood flow and improved the range of movement in MS patients.

Now, provincial politicians, besieged by phone calls and e-mails from desperate patients who see Zamboni's so-called "liberation" therapy as their only hope, are under pressure, either to fund so-called liberation surgery here or to fund expensive clinical trials for the procedure.

But no matter how much sympathy we all feel for desperate MS patients who see Zamboni as their saviour, it would be an enormous error in judgment for the Alberta government to sanction or fund this surgery -- or to divert any of the province's limited research and public health dollars toward clinical trials of a technique both dangerous and deeply dubious.

Since Zamboni's explosive news broke, independent scientists have tried to find some confirmation of his theory. Separate groups of medical researchers in Germany, Sweden, and Buffalo, New York, have used MRI and ultrasounds to examine the cerebral and jugular veins of patients with multiple sclerosis and those without.

The Buffalo study found that just over half the MS patients it screened had some vascular blockages -- but that about one-quarter of people without MS had the same blockages. The more recent German and Swedish studies, published this month in the journal Annals of Neurology, found no relationship between blocked veins, blood flow and MS symptoms.

No matter. Over the last few months, trusting, vulnerable patients have been flocking to clinics in places like India, Poland and Bulgaria, paying up to $30,000 to undergo Zamboni's risky and unproven "liberation" therapy.

Some have come home saying they have more energy and range of movement.

Such testimonials, however inspiring, are not proof. In the first place, "liberation" therapy is used to treat a form of multiple sclerosis known as "relapsing-remitting MS." It is a roller-coaster disease, where people can often experience remissions or lessenings of symptoms, sometimes for no apparent reason.

And don't discount the power of the human mind, of hope itself. Patients who truly believe a treatment will help them to walk better or grip better will likely feel more confident and better able to complete such tests. And the more invasive or expensive a treatment is, the greater the placebo effect is likely to be. Call it high-tech faith healing -- if you fiercely believe something is going to make you feel better, if you've invested all your dreams and energies in that conviction, you're likely to report that you do feel better.

Yet according to an Alberta Health Services bulletin issued on Friday, "As of today, no Canadian neurologist has found significant or sustained improvement upon examination of patients who had venous angioplasty performed, despite the fact that most returning patients report feeling better and sometimes note improvements in sensation or walking."

Still, Saskatchewan Premier Brad Wall has vowed Saskatchewan would fund clinical trials of liberation therapy. And Alberta's premier, Ed Stelmach, told reporters Alberta had "no problem" with participating in similar trials.

A spokesman for Stelmach says the province will only fund research if it's supported and carried out by the Alberta medical community.

Even with that proviso, the government needs to take a big step back. There are many world-class medical researchers working on promising treatments for all kinds of conditions.

Provinces only have so many medical research dollars to spend -- and a full-fledged clinical trial of Zamboni's surgery would be both extremely expensive and ethically complicated, given the inherent dangers of cranial venous angioplasty.

We mustn't politicize or sentimentalize the independent grant process, allowing elected officials to decide which pet project to fund. Money needs to be channelled to the most promising research, research that meets every rigorous, peer-reviewed scientific standard.

To deny funding to legitimate local research, the better to chase Zamboni's unicorn, would be grossly irresponsible -- to MS sufferers most of all.

Multiple sclerosis is a national scourge we must fight with all the best science available. But we won't find cures by running down blind alleys -- or validating false hopes

Dear Editor,

Clearly Paula did not do her research! Zamboni’s theory is not based on veins blocked by iron as she states in her article. CCSVI is chronic cerebro spinal insufficiency and is theorized to be caused by blocked internal jugulars and/or azygos veins that drain the blood from the brain back down to the heart. The iron deposits are believed to be the lesions on the brain and spine that have always been classic signs of multiple sclerosis. Multiple sclerosis by definition means “many scars”.

To call Zamboni’s theory a “unicorn” is so grossly childish it boggles my mind. CCSVI is not a fairy tale creature, a blind alley or a false hope. CCSVI is a real medical phenomenon that has been scientifically validated and published in medical journals. Veins are made to move blood. Blocked veins are therefore bad. Regardless if there is a link between CCSVI and MS any person with dangerously blocked veins should be able to have them fixed whether they have a pre-existing condition of MS or not.

I am appalled at Paula’s cynical and heartless view of not following Saskatchewan’s lead in funding research and clinical trials. If we all thought this way we would have never had such surgical breakthroughs like heart bypass and brain surgery! So essentially, Ms. Simons is telling the roughly 75,000 Canadians afflicted with MS is that they are not important enough for our government to risk funding studies that could potentially rid them of suffering and consequent death? Simons says “…it would be an enormous error in judgment for the Alberta government to sanction or fund this surgery -- or to divert any of the province's limited research and public health dollars toward clinical trials of a technique both dangerous and deeply dubious.”

The fact that she uses terms like “dangerous and deeply dubious technique” only intensify the overall ignorance of this story. Angioplasty has been performed for many, many years and the risk of death is rated at 1 in 1000 and that is for ALL types of angioplasties. The benefits from angioplasty far outweigh the 1 in 1000 risk or it would not be performed in our country. These studies and clinical trials will put to rest any doubts whether this treatment is beneficial or merely placebo effect.

Of course Paula could not help but grab hold of the two recent studies by the Swedes and Germans that did not find any correlation between MS and CCSVI. The truth of both those studies has been out for awhile now. (maybe Paula didn’t get the memo) Neither of those groups followed the Zamboni scanning protocols so to try and compare them is ridiculous. She goes on to state that the angioplasty referred to as the Liberation treatment is only used to treat relapsing remitting MS. How she ever came up with that tid bit is beyond me. Thousands of patients with ALL types of MS have been reaping the benefits of this procedure! I know many PPMS and SPMS patients who are now out of their beds and wheelchairs! There has never, ever been any treatment for PPMS or SPMS before this. There has never been any treatment that has made so many MS patients feel this good!

So naturally, it must be placebo effect right? Placebo effect can account for a number of positive effects but cannot be given credit for bladder and bowels spasms going away, balance returning and gait improvement and eye sight improving. She also cites in her article that Alberta Health has stated that “"As of today, no Canadian neurologist has found significant or sustained improvement upon examination of patients who had venous angioplasty performed, despite the fact that most returning patients report feeling better and sometimes note improvements in sensation or walking."

I would like to know who these neurologists are that are examining the returning “liberated” patients? My neuro wont even see me anymore since I have had the angioplasty! He is not interested! Why would they be? If this angioplasty works then it is proof positive that MS is vascular and all these years the neuros have been treating us with ineffective and often dangerous drugs. If I were a neuro I would be very worried right now.

Another statement by Paula: “Provinces only have so many medical research dollars to spend -- and a full-fledged clinical trial of Zamboni's surgery would be both extremely expensive and ethically complicated, given the inherent dangers of cranial venous angioplasty.” I agree about the expense part but when you compare it dollar for dollar to the millions per year that we as patients are spending on ineffective drug therapies there is no contest! I am glad she brought up ethics! How ethical is it that medical professionals and members of MS Societies can own stock in pharmaceutical companies and be paid to do research and clinical studies by these pharma companies? That is a HUGE conflict of interest! When Alberta does go ahead with trials and studies the ratio of neuros to vascular specialists should be even at the least.

Another profound statement by Simons: “We mustn't politicize or sentimentalize the independent grant process, allowing elected officials to decide which pet project to fund. Money needs to be channeled to the most promising research, research that meets every rigorous, peer-reviewed scientific standard.”
Brad Wall of Sask. And Ed Stelmach of Alberta did not independently decide to fund trials and research. Hundreds of thousands of Canadian voters have been inundating our politicians with their desire for help in this matter. Anecdotal or not, thousands of MS patients are better after the angioplasty and Stelmach and Wall listened and, thankfully, are doing their jobs!

We Have Created A Monster!

2010-07-30T08:58:00.000-07:00

‎"Of the MS society's statement, Dr. Lorne Brandes, an oncologist who
blogs for CTV News' Health Blog, wrote, "If their official response to
Dr. Zamboni's research was any cooler, icicles would form on their
spokespersons' lips. Why am I not surprised? These organizations are big
money operations, run by risk-adverse professionals and fundraisers who
are absolutely petrified of making a mistake and prematurely backing a
losing horse. Their interests are also heavily intertwined with those of
Big Pharma." Erika Milvy, Huffington Post

Time after time, I hear about health official and government leaders saying that until the MS Society of Canada gives it's approval for CCSVI studies they will not endorse any action to fund research. Why is then, when I have asked officials at the the MSS about this they say that they have no say in this matter and it's not up to them?

The MSS is playing a two faced game and should be ashamed that it has lost sight of it's original mission to help find a cure for MS. If they are truthful, as they so self righteously proclaim, that they would be overjoyed at losing their paid positions should a cure for MS come along, then why are they hesitating to publicly state that they are 100% on board with CCSVI research? They grudgingly gave 2.4 million in grants for research recently, but it was given out to neurologists who are interested in DISPROVING a link between CCSVI and MS. Why isn't the MS Society championing MS sufferers by addressing the blatant discrimination against MS patients who are being denied angioplasty of their jugulars and azygos in Canada when it is ALREADY an approved treatment? Whether a link between MS and CCSVI is established, folks with MS have dangerously blocked veins that need treatment now! Why isn't the MSS of Canada backing MS patients rights for this treatment? Why do they continually call the treatment NEW and EXPERIMENTAL when they know angioplasty has been talking place for years? In my opinion,they are taking advantage of our naive politicians and public in order to control the CCSVI situation and manipulate information to increase their odds of survival and financial security.

If they are to be taken at their word that that their opinion holds no sway then why did they bother issuing a position statement to politicians in June? ( written by John Clifford Chair, Ontario Division Board of Directors of the MSS) In this letter Mr. Clifford tries to downplay the public demand for CCSVI research and testing by calling it experimental. His overall tone is negative and completely inappropriate for an agency that purports to seek a cure and represent patients with this disease. They should be encouraging politicians to push for testing and treatment on compassionate grounds and making the history and damage of drug therapy clear so that it can be considered in reference to this new possibility and presenting the history and safety record of angioplasty, on veins, so that politicians understand that the potential value is well worth the minimal risk of the treatment.

I am asking all Canadians to write to their politicians, newspapers, TV news and radio and let them know how disgusted we are with the MS Society. For years they have been the "go to guys" for all things MS. They clearly do not have our best interests in mind anymore, and like a dying horse, should be quickly euthanized and put out of our misery.

Saskatchewan Scores! Zwozdesky Fumbles.

2010-07-29T11:51:00.000-07:00

I was so elated to hear about Brad Wall in Sask. saying he will help fund CCSVI studies. Today on QR77 with Dave Rutherford, Gene Zwozdesky, our health minister of Alberta, was discussing how our Province is looking into the CCSVI phenomena and I was disappointed. Clearly Gene is being brainwashed by the MS Society if he truly believes they want to help prove CCSVI and get treatment in Canada approved. Sadly I was unable to call in and talk to him but I wrote him a letter:

I heard you talking on the radio this morning and I was unable to phone in and speak so I am writing to you now. I believe that first and foremost ALL the MS patients in Alberta should be allowed to have scans to detect CCSVI and the angioplasty to fix their dangerously blocked veins. This procedure is approved by health care and performed on kidney dialysis patients every day across Canada when their jugulars collapse but is denied to patients with a pre existing condition called MS. This is TOTAL DISCRIMINATION and should be rectified immediately.

Clinical trials should then take place to prove a link between MS and CCSVI. The people that should be involved in these trials are vascular and neurological Doctors. Currently, I have only seen nay-saying neuros getting the grant money for studies. Why would you call an electrician when you have plumbing issues?
My next point of contention is I do not for one moment believe the MS Societies of Canada have our best interests in mind. They have fought the CCSVI theory from day 1. The only reason they finally jumped on board was they were losing revenue from donations as folks were boycotting them for their negativity towards CCSVI. When Canadians marched across the country on May 5 demanding our government to take note of CCSVI, the MS Society slithered in and used us to ask the government for 10 million dollars for CCSVI research. The MS Society's behavior has been appalling and they should not be involved in anything to do with CCSVI as they are obviously biased. Lou Ann Metz of the Calgary MS Clinic is one of the neuros who received some of the MS Societies grant money but she is not doing the study to show that CCSVI is real! She and her cronies want to disprove it! How can she be trusted to publish the truth from the research?

Based on BNAC"s preliminary studies we all know that it's just a matter of time before they prove that there is a link between CCSVI and MS. Unfortunately MS'ers cannot wait for years of research to conclude. Alberta should do the right thing and treat MS'ers blocked veins now! Dr. Sandy McDonald of Barrie, Ontario estimated the angio to cost around $1,500.00 per patient. A mere pittance when you compare that to the cost of the often toxic and ineffective drugs that we have been given. This treatment would save billions in health care spending in the long run. We just need to ask our government if they think we MS'ers are worth it or will they continue to discriminate against us until we die?I was lucky enough to have $10,000.00 to go overseas and be treated . I am now 100% MS symptom free.

Ginger MacQueen

July 13 My first Doppler post op

2010-07-13T14:55:00.000-07:00

I am happy and relieved to say that my Doppler today showed that my stent is fine and has not migrated or fractured and the blood flow is proper. My right IJV received no stent so I was worried of re-stenosis but it is totally fine too!

I have been continuing with going to the gym, usually 5X per week and going for physiotherapy at least 1x per week. Previously my right side which is my weakest would start to fatigue after being on the elliptical for half an hour of cardio. I would get a slight limp for a few minutes but then I would recover 100% in just a matter of minutes.

Now, in the last 2 days after my elliptical workout I DO NOT LIMP AT ALL! My strength has obviously increased!!! Woo! Hooo! I have been getting a form of acupuncture at the physiotherapist's for my groin problem and that is helping immensely with the muscle tightness in that area. My PT says usually a groin pull like I got as a result of the angio, usually goes away in about 3 months so I'm right on schedule!!

Since I have had the angio I have not been constantly plagued by colds and flu either! I believe my immune system is starting to function properly again. I still get the bladder infections but Im hoping they too will stop once my immune system is 100%. I thought for a moment that I was getting my bladder spasms back but I realized I was getting a bladder infection! lol

I feel wonderful and wish that everybody could have this procedure in Canada now!!

The Scarlet Letters

2010-07-06T07:28:00.000-07:00

Every time I hear the media talk about the angioplasty for CCSVI they always use the terms controversial and experimental. I just about crawl out of my skin when I hear this. It infuriates me that the simple angioplasty to unblock our veins has been categorized as such when, in fact, it is not new or experimental! Angioplasties have been performed for many years in Canada and the world! The exact same procedure I had to unblock my jugulars is the very same one that kidney dialysis patients undergo to unblock their jugulars when they collapse from their kidney treatments.

If we expect our government and health care to listen to us and approve this procedure we need to talk to them and the media using the proper language and terms. Since the media has latched on to CCSVI they have been calling it the Liberation treatment as Dr. Zamboni dubbed it a few years ago. We all should stop using this name or "Zamboni treatment" or "CCSVI surgery". Many people hear those names and since they are new they assume the treatment is new, when it is not. Folks in the medical field know the treatment is not new or experimental but the naysayers use the ignorance of the general public against us. Our health Minister Gene Zwozdesky is not a Doctor.For the sake of our cause to get angioplasty for all Canadians please use the term ANGIOPLASTY from now on when discussing this procedure.

The issue at hand is MS patients are being discriminated against by our government because they are being denied angioplasty that is already approved and covered by health care in Canada.

June 28 Health Update

2010-06-28T16:15:00.000-07:00

Its almost 3 months since I had my treatment in Poland on March 30 and I'm going out of town on June 30 so I thought I would go ahead and do a post now. A week or so ago I reported that I went out in 28 degree heat and had a problem getting my right leg to function properly. I thought that 28 degrees was going to be my heat threshold but today I was out in 30 degree heat riding my bike, walking the dogs and doing yard work and I was fine. Weird but good!

One thing I think I need to clarify for some is that the liberation treatment has made some huge positive changes in my MS. I am not, however, 100% currently. I am hoping that with time my myelin will heal and some of my symptoms will improve even more or completely go away. I didn't get these symptoms overnight nor do I expect them to leave overnight either. If I end up only being able to go outside if it's under 28 degress I will be happy! This is way more than I had prior to my treatment. Some days I feel better than others but I am optimistic that if I continue to take extra good care of myself I will eventually heal to the point where I can run a marathon in the Moroccan dessert!

June 13 Health Update

2010-06-13T15:50:00.000-07:00

Today was 28 degrees Celcius and I took my dogs to the off leash park. My right leg decided to become 97% useless during the walk in hot sun. I could stand on it fine and it didn't go numb but I could not get it to move. I had to grab my pant leg and pull up on it in order to move my right leg forward. I didn't experience anything else but I couldn't do my normal dog walk around the park.

Corticle Remapping To Regain The Feeling In Numb Body Parts.

2010-06-11T11:55:00.000-07:00

My friend Trevor has made several videos on MS and this is the newest one. I am truly amazed that our physicians and care givers have no knowledge of this simple technique or just choose not to share it with us and give us drugs instead. Please CLICK HERE.

June 6 MS Walk Day in Calgary.

2010-06-07T07:57:00.000-07:00

Yesterday at the MS walk, our group was given a tent, tables and chairs by the MSS Walk coordinators. We certainly did not expect that and we we were grateful. The hours flew by as Elmer, Marti, Tessa, Stuart, Gerry and I manned the tent and talked to interested folks and passed out CCSVI literature. (Apparently I missed Bernie as he was there in the AM to hand out helium balloons but was told balloons were not allowed on the island because of health hazzard to the geese.) It was awesome timing on CTV's part the night before the walk to run that news segment on CCSVI as it was on just about everybody's lips that morning!

For many years a lot of us actually supported the walk by donating money or gathering donations and completing the walk. This year was a bit different. Since I first heard of CCSVI back in November 2009, the Canadian MS Society has been poo-pooing the theory and refusing to adequately fund research for it or lobby the government on behalf of MS patients to scan and treat us now on a compassionate basis. Every news article and TV show about CCSVI that the MSS has been a part of has been full of negativity and comments likening CCSVI to snake oil cures. I have been actively boycotting the MS Walks in Canada this year because I have been so disgusted with the societies loss of vision.

On May 5 when folks all across Canada marched for CCSVI Awareness Yves Savoie, President of the National MSS addressed Parliament, supposedly on our behalf and asked for ten million dollars for research. I was furious as I felt that the MSS used our blood, sweat and tears to leverage funds from the government when all along they have NEVER supported CCSVI. What were they REALLY going to do with this money?? Currently news reports are talking about a rift within the MSS during board member elections. Some of their members feel threatened by MSS members who seem to be pro CCSVI and they want them drummed off the board. CLICK HERE.

During yesterdays event a couple of the MSS folks stopped by our tent and chatted with us. They said that they wanted the same things as we did and that we were all on the same side. I asked one gal, Ms. Wong, to clarify what she meant by this statement. She said that the MSS supports MS patients being allowed to be scanned and treated concurrently with ongoing research to find a link between CCSVI and MS. I was certainly surprised to hear this. I asked her if she was aware that AHS's statement of criteria regarding CCSVI treatment had been fulfilled and so now AHS should be moving forward to get approval for the angioplasty treatment in Canada. Wong said that that was up to AHS. I told her that AHS was waiting for the MSS to give them the green light before they proceeded. If the MSS is really pro CCSVI now, they need to get together with AHS and recommend that AHS take the next step and submit this treatment to the province's health technology assessment process so that it can be introduced as a new procedure and put into practice.

Alberta Health Services Position

1. At this time, it is only a hypothesis that CCSVI contributes to, or causes, Multiple Sclerosis, and that venous angioplasty is clinically beneficial.
(The current popular understanding of MS being a brain disorder and auto immune disease is just a theory also. This point is irrelevant!)

2. Further, independent and controlled studies are required to prove, discount, or better understand Dr. Zamboni’s study results.
(How many studies are required? Buffalo is doing ongoing research and their preliminary findings are more than adequate to establish a strong link between blocked veins and MS patients.)

3. The nature and frequency of the risks on venous angioplasty are not yet fully understood.
(This is a complete lie. Angioplasties are being done every single day and have been performed for many years. The odds of dying from any type of angioplasty is 1 in 1000. A perfectly acceptable number in the field of medicine.)
Without a clear indication that venous angioplasty carries a clinical benefit that outweighs the risks, it cannot yet be supported as standard practice.(The risk of angioplasty is so minute and the anecdotal evidence of benefits is overwhelming)

4. At present, there is no proven indication for venous imaging or venous angioplasty in patients with Multiple Sclerosis. Therefore, unless part of an approved research protocol, these procedures will not be provided by AHS to persons with MS.
(This is a ridiculous statement. Whether a person has MS or not, if they have blocked veins from the central nervous system that is a bad thing! They need medical intervention ASAP!) Kidney dialysis patients suffer from collapsed jugulars and are treated with the same balloon angioplasty treatment that we want for MS patients. Many countries like, Kuwait, Australia, India, Poland and Bulgaria have seen enough of an indication to warrant treating their citizens on a compassionate basis.)

5. If, and when, there is independent scientific validation of Dr Zamboni’s results, Alberta Health Services will seek approval from Alberta Health and Wellness, under the province’s health technology assessment process (described at
http://www.health.alberta.ca/initiatives/AHTDP.html), to introduce the new procedure into practice in Alberta.
(This is irrelevant. Blocked veins are bad! If they weren't a health risk why do Dr's bother to open the collapsed internal jugular veins of kidney dialysis patients? Clearly this is an extremely hypocritical statement and an example of the gross injustice and discrimination being carried out against MS sufferers in Canada.

If the MS Society is truly on board with CCSVI now, I would like to see some positive actions on their part. They owe the MS suffers of Canada some answers and a huge apology.

CCSVI_20100523.mpg

2010-05-30T10:59:00.000-07:00

The Liberation War
Ashton Embry

A recent documentary referred to “The Liberation War” which has engulfed the multiple sclerosis world. I thought it might be helpful if I looked at various aspects of this conflict which is causing great distress and hard feelings. First of all, the war is between the MS patient community that wants testing and treatment for CCSVI made available in the near future and neurologists who want the availability of such testing and treatment delayed for a long time. Below I look at the reasons why each group has taken the position they have.
The MS patient community has adopted their position of immediate, positive action for a number of reasons. Most importantly, there is now solid scientific evidence that CCSVI is a key part of the MS disease process.
This interpretation is derived from four established scientific points.
1) CCSVI is associated with MS as has been documented in centres around the world, including Italy, USA, Kuwait, Jordan and Poland.
2) CCSVI has been established to be present at birth and thus it definitely precedes the MS disease process.
3) CCSVI is associated with plausible biological mechanisms which can explain aspects of the MS disease process.
4) There is abundant empirical evidence that these biological mechanisms are occurring in MS.

These four points demonstrate beyond a reasonable doubt that CCSVI is part of the MS disease process. Thus, it is only common sense to want to have a key factor in MS treated as soon as possible.
An additional push has been the numerous, well documented accounts of substantial improvements of MS symptoms, including fatigue, brain fog, balance and walking ability, enjoyed by people with MS have had CCSVI treated. I have personally witnessed such improvements in people and have no doubt that they are real.
An additional consideration is that it will take at a minimum 7-10 years to complete research on the efficacy of CCSVI relief. Given that substantial permanent disability can accumulate in 7-10 years, persons with MS do not
have the luxury to wait for such a long time for even more proof that CCSVI treatment is probably of benefit.

Finally, it must be stressed that the recommended treatment for relieving CCSVI is balloon angioplasty. This is a very safe procedure which carries very low risk.
In summary, persons with MS are seeking to be tested for a serious pathology which is strongly associated with MS - blocked veins which drain the brain. They also want to have a very safe, well established, endovascular procedure done if such pathology is found. It only seems sensible to ensure such testing and treatment are available.
Unfortunately, the availability of CCSVI testing and treatment for persons with MS is being strongly opposed by neurologists. The obvious question becomes, why would neurologists, who are charged with helping persons with MS maintain the best possible health, adopt such a seemingly harmful position when it comes to CCSVI relief.

Neurologists claim they are against CCSVI treatment at this time because they do not know if such a treatment is of benefit for persons with MS and that endovascular treatment carries some, albeit minor, risk. On the surface, such a rationale seems to have some merit. However, a logical examination of the situation shows that it is very misleading and not in the best interests of persons with MS.

Given the current data, there is a very good chance CCSVI relief will provide substantial benefits for persons with MS. Thus, if such treatments are available soon, persons with MS will experience a major gain. If the treatment is delayed, they will suffer a major loss. Of course, there is a chance that the treatment may not be of value and in this case persons with MS will suffer either a minor loss if treatment is made available (very rare, adverse effects of the treatment) or no loss or gain if it is not done.

Persons with MS are far better off with the option provided by treatment being available - a major gain versus a minor loss - as opposed to the option offered by no treatment - a major loss versus no loss or gain. The fact that the neurologists are recommending the latter option which is not in the best interests of persons with MS is troubling and needs an explanation.

One might have thought, given the very low effectiveness of the current drug treatments, the neurologists would have welcomed a new, safe, low cost and potentially effective option for MS treatment. However, I have yet to hear anything positive from the neurological community regarding CCSVI. Ever since the CCSVI cat was let out of the bag by that exceptional documentary, neurologists have mounted a venomous, anti-CCSVI campaign based on fear, half-truths and outright false statements. For example, one prominent neurologist publicly called CCSVI a hoax, implying that Dr Zamboni, an internationally recognized vascular researcher, is a fraud. Another neurologist publicly called the CCSVI documentary shoddy journalism and said the health reporter had no interest in the truth. Recently, CCSVI treatment was performed on a person in Canada and she has enjoyed major clinical improvements. The reaction of the neurologists to this event has been to demand for professional censure of the interventional radiologist who relieved the major blockages in the person’s veins and improved her health.

I could relate many more accounts of incredibly negative actions of neurologists and they all add up to the conclusion that, when it comes to CCSVI, neurologists are concerned about more than just the health of their MS patients. So what is another plausible explanation for the neurologists being so adamantly against CCSVI treatment?

When one is looking for motivation, it is can be helpful “to follow the money”. It is reasonable to assume that a person or profession will be in favour of actions which will enhance their opportunities to increase their intake of money. On the other hand, they will understandably be against actions which have the potential to decrease their future earnings.
Given that, if CCSVI treatment results in major improvements in their patients, it will replace the current drugs as the first line of MS treatment. In fact, CCSVI treatment holds the potential for many newly diagnosed people to not have to ever use an MS drug. Most importantly, interventional radiologists will replace neurologists as the primary care physicians of persons diagnosed with MS.
There can be no doubt that neurologists are aware of the above possible outcomes, all of which will negatively impact neurological practices. The other factor that has to be mentioned is that most neurologists have very close ties to the pharmaceutical industry which is currently raking in almost ten billion dollars a year from MS drugs. Such ties include substantial funding
from the pharmaceutical companies and company sponsorship of most neurological scientific and social events. Any decrease in drug sales would negatively impact the neurologists.

In summary, it is clear that the prevention of testing and treatment for CCSVI is in the best interests of neurologists and thus their actions are rational and understandable. The question for government bodies, which will ultimately decide on the availability of CCSVI treatment, is whether or not the physical health of MS patients is more important than the financial health of the neurologists. That is what the “Liberation War” is really about. Persons with MS have to remain very vocal and proactive in order to win this war.

June 28 Health Update

2010-05-28T18:28:00.001-07:00

Today I went back to my physio, after one week of doing his prescribed exercises and stretches, and he noted more strength in my right side since last week! I have been working out at the gym 5 days a week now with my husband Steve.

One thing I have noticed since the procedure in Poland is my groin area where the catheter was inserted into my femoral artery is quite painful still, after almost 2 months. Steve thought I had a groin pull but my PT Keith checked it out and said scar tissue builds at the injection site. This is pretty common with angioplasties. He also said that some of my muscles and tendons that have been working over time for the ones that weren't working previously, are all tight. All these tight tendons and muscles are adjacent to the injection site for the angio. Makes sense to me. Keith put a heat compress on the area first. After about 7 minutes he removed the heat and put pressure on the scar tissue and massaged it to try and break it up and also massaged the adjacent area too. Afterward I am told to put an ice pack on the area for 10 minutes. He wants me to do that once every day in between my gym and twice a day stretch sessions.

I am getting so excited as the possibility for me to run again gets closer and closer to being reality!! I asked if I should be doing lunges yet and he said I should let my thigh heal first. I noticed at the gym this week that my recovery time after working out is a lot faster now post op. Before I would limp around with burning, tingling, numb feet and spaghetti legs for at least a half an hour or more after a work out. Now I limp slightly for about 5 minutes. No burning, tingling or spaghetti legs now! I also have been monitoring my blood pressure on a daily basis this last week and plan on doing so for awhile as you really need to do look at what your blood pressure is over a long period of time in order to see any real changes. So far my average has been 117 over 79. Pretty darn good for an old girl with MS!

World MS Day

2010-05-26T17:01:00.000-07:00

Today is May 26, 2010 and World MS Day. I have been reflecting on the last 6 months since I heard about CCSVI and just about 2 months since I had the liberation treatment. What strikes me is how many folks who have been liberated are still in the trenches fighting for CCSVI scans and treatment in the US and Canada. I have never heard of this phenomena before with any other treatment or drug therapy for MS. Dr's Simka and Ludyga in Poland have treated over 300 patients for blocked veins now and many more vascular surgeons are jumping on the CCSVI bandwagon all over the world.

Why does the government ignore it's people and their rights to have blocked veins treated regardless if they have MS. We are not fighting to have the medical professionals and government recognize CCSVI as the sole cause of MS. NO! We want to be treated for blocked veins that are responsible for draining the blood from our brains back to our hearts. That is all. SO why then are we forced to wait for years for research and clinical studies? When they started doing angioplasties back in the day, no clinical trials took place. They just started doing them.

Canadians and Americans need to educate the government and health authorities about CCSVI. They need to know that no blood flow is BAD. Regardless of any pre-existing conditions an angioplasty is the answer. Again, I want to reiterate that CCSVI is probably not the sole cause of MS but it certainly seems help a lot of people.

Please help spread the word about CCSVI by writing to your local government officials and health care. Make a You Tube video of yourself before and after treatment and hold demonstrations and educational seminars. We must keep the pressure on and build awareness until CCSVI are the 5 letters that are ingrained in everyone's brain across our countries.

Getting The Proper Frame of Mind Before Your Treatment

2010-05-24T08:44:00.000-07:00

I just heard a disturbing story from a friend who's friends just returned from Poland for the Liberation treatment. Apparently out of all the 18 patients that were there that particular week, not one of them noticed any positive changes after the treatment. The friends are quite unhappy and telling everyone they know that they were basically burned for ten grand. Whether this story is true or not it does bring up a good point.

Dr's Simka and Ludyga have never promised anything from this treatment. They state that they are hopeful it will help MS sufferers but it is too soon to say. They are performing the treatments based on anecdotal evidence and compassion. When I went to Poland for my treatment I was still skeptical about the whole thing. I told myself that if it would just stop my progression and attacks I would be satisfied. Once I had the procedure I noticed many of my baseline symptoms lessen or disappear. These were bonuses!

Had I not received any of these "gifts" I would be anxiously waiting to see if I got any more attacks or became sicker over time. I would not be bashing the Doctors at this point. I think everyone who is planning on going for treatment should have the proper frame of mind beforehand to avoid any possible "let downs" post op. There are no guarantees except that your blocked veins get opened up and proper blood flow will be restored. You have a 50% chance of re-stenosing as well. There is also a chance that the bonuses are just placebo effect too!

My First Physio Appointment Post Treatment

2010-05-22T15:47:00.000-07:00

May 21 I went to Panther Physiotherapy for my first appointment. I told my therapist my history and that I wanted to run again and asked him what my chances were. He did a strength assessment of both my legs. The right side was definitely weaker but what I found surprising was the weakness was not so much in my feet or legs but in my hips and buttocks. After examining me he said there was no evidence of anymore foot drop and after strengthening my muscles and ensuring my balance is stable I will be able to run. He showed me some exercises to do twice a day, every day for a week and then come back in and see how I'm doing. I was shocked at how easy and matter of fact he was when addressing my desire to run. WOW! :D

May 22 I slept well last night other than a painful twinge in my right groin area. This is the same area the catheter for the angioplasty was inserted and it twinged all night long. (Probably from the stretches and exercises I did yesterday) This morning I did the same routine and found my right groin soar at times but nothing brutal. My physiotherapist told me to continue the routine unless of severe pain so I'm okay for now. He told me to go back to the gym and work on the elliptical, weight bearing exercises and yoga. He said to keep riding my bike as often as possible too. I need to gain strength and stability in my core in order to be able to run and not injury myself. He told me to keep walking but not to try running on the treadmill as my body was not ready yet.

On another note I have been drinking 2 Kale and fruit smoothies per day for the last week. I have been told that the Kale is a powerful antioxidant and will work like a cleanse and purge all the toxic crap out of my system. One thing my husband noticed was that my breath smells horrible! lol I was also told that will go away once all the toxicity is gone. I have also been adhering to Ashton Embry's MS Diet and I've done really well. Safeway has a great selection of gluten free products so I don't feel like I'm denying myself anything important. The hardest part for me is going without the sugar. It's no wonder I have had chronic yeast infections as I have always had a huge sweet tooth. I have been eating lots of fruit including dates when I get the craving for something sweet.

As far as everything else goes, I haven't observed anymore changes in myself; good or bad. I'm hoping that I am in the healing process right now and I plan to take extra good care of myself from now on.

V for Vendetta

2010-05-20T07:44:00.000-07:00

Everyday I keep hoping that the tide will turn and the world of medicine will openly embrace CCSVI and the Liberation treatment. Then I woke up. Just in the last couple weeks the proponents of CCSVI made great strides in Parliament with the help Dr. Sandy MacDonald from Barrie, Ontario.On another positive note the Interventional Radiologist from Vancouver was not punished for treating patients "BC1 and BC2 for CCSVI in a Victoria Hospital.

The College of Physicians reportedly stopped CCSVI scans at the West Mount clinic in Quebec.(Now I am told it was our own Government!!) The National MS Society used our protest to try and leverage 10 million dollars from the government by saying "The people have spoken". Like they were with us all along! Bastards! So what the hell is going on? What can the people of Canada do to wake up the government?

A friend of mine who was recently liberated in Poland reminded me of the movie "V for Vendetta" with Natalie Portman. Basically, if you haven't seen it, it's a futuristic story about a society that is ruled by a totalitarian regime. A single revolutionary named "V" sparks a powder keg and frees the people from their oppressive government. We could use a guy like that right now.

Could you imagine if all the MS patients fired their neurologists? I could just see Lou Ann standing in the empty Calgary MS clinic saying "WTF?" Wouldn't it be cool if we all stopped our meds as a drastic form of protest and the pharmaceutical companies would be sent into a panic of epic proportions! WOW!! Now that would make a cool movie!

The Vampire Can Walk In The Sun Again!

2010-05-15T09:17:00.000-07:00

Before my liberation treatment I was not able to live in temperatures above 20 degrees Celsius. In fact, temps around 18 were optimum for me. In the late Spring and entire summer I would be a prisoner in my air conditioned home, held hostage by the sun's heat. I would joke to myself that I was like a vampire but the joke just wasn't funny anymore after living like this for the last 10 years. If I exposed my body to any type of heat above 20 degrees I would get extreme pain in my hands, arms, feet and legs. My feet would feel like they were burning and my body would go all tense and tight and I would not be able to walk at all. I would become dizzy and experience vertigo.

Since spring began a few weeks ago and the temperature has started to rise I have been watching myself with great interest as I'm hoping my heat intolerance is gone. I have had hints that it might be gone like when I had a hot bath and was able to clean the tub after. (Usually I felt like a limp piece of spaghetti and had to go directly to bed leaving the tub to cleaned on another day.)

Two days ago I decided to take my dogs to the off leash park with my son Darin and his puppy. It was around 22 degrees Celsius so I was a bit concerned how my body would react. When I started walking in the park my left knee felt like I had a tensor bandage wrapped around it and I thought "Oh God! here it comes!" But then I kept walking and the "hug" went away. I was waiting for the ax to fall but it never did. I was aware of the sun's heat on my skin and the breeze blowing but I had no exacerbations at all!

I was able to walk in the bright heat of the sun with my dogs and my boy like a normal mom. I did not explode into flames like an Anne Rice character. This was the most marvelous feeling and I laughed because for most people it was so mundane and ordinary for them. My right leg and foot are still the weakest links in my recovery and the leg did start to feel slightly burning but that was all. I am hoping that when the temperature really goes up I will be able to withstand the heat and enjoy my summers again.

A Month And A Half Post Op

2010-05-12T11:36:00.000-07:00

I went to my GP yesterday as I had to do a driver's medical to renew my license. My Blood pressure was normal. Usually I have low BP so that was surprisingly good. I passed all the physical tests like vision, balance, walking on tip toes and heels and squatting down and being able to stand up unassisted. I think I impressed my GP. I know I impressed myself! I asked him for a referral to a physiotherapist as I want to get my right leg rehab'd. It is still weak and I'm hoping that with time and exercise I can get it to the point where I can backpack the West Coast Trail again and be able to run down the beach if I so desire. One thing I noticed during the examination was my reflexes are still hyper but my GP said in time that may settle down.

I have been riding my bicycle every day the weather permits and I had forgotten how wonderful it feels to physically exert yourself and feel your heart pumping and your body sweating. I love the fact that I can go outside in the heat and enjoy a bike ride whereas before I could never be in the heat for long as all my symptoms would exacerbate and my body would stiffen to the point I could not function. I know this probably sounds lame to someone without MS but when I'm riding my bike down by our pond and watching the birds and muskrats I get the song by Queen playing over and over in my head and I grin from ear to ear! "I want to ride my bicycle! I want to ride my bike! BICYCLE! BICYCLE!" I'm sure the occasional passerby thinks I'm a bit loony grinning from ear to ear with bugs in my teeth but I LOVE IT!!!

I have been doing the MS diet by Ashton Embry at www.direct-ms.org and I hope that by taking better care of my body post op will benefit me even more. I started drinking kale smoothies, every day, on the advice of a friend. I have never been a veggie lover but these are alright and the kale is very good for you too! My friend Wendy suggests you use a whole head of kale in each smoothie but since I'm a newb I started with about four stalks in the blender. I add a little OJ, a whole fresh pear,strawberries, banana, kiwi etc.(I blend all that up together first.) Whatever you like just throw it in! Then add about 2 cups of ice and blend until smooth.

Another great health drink I have been doing is Youth Juice. I drink about 4 oz. per day. It's a super antioxidant too! I am going to start hitting the gym again as I feel that, by now, my stent has had time to settle in.

It's strange but when I first found out that I had MS I realized it was a gift in disguise. It made me realize how precious life is and how important good health is to a quality life. Now that I have been given a second chance I am going to take great care of myself to ensure that I remain as healthy as possible so I can enjoy my life to the fullest.

Did The Canadian MS Society Take Advantage of the CCSVI Demonstrations Across Canada?

2010-05-07T17:33:00.000-07:00

So now, all of a sudden, the CMSS is on board with CCSVI research. WTF mate? They just grudgingly offered a grant for the token amounts of $100,000.00 per year for 2 years that was the laughing stock of the research community. Now they leap on to the CCSVI bandwagon the very same day that MS patients and supporters were rallying across Canada for scanning and treatment. What an opportune time to ask the Government for ten million dollars.

I am extremely skeptical of their astonishing behavior. For months now, since the CTV Zamboni story in November, all that came from the MSS in regards to CCSVI were negative comments and refusal to act on this promising, non drug treatment. I have serious doubts about the sincerity of this organization.

I wonder who they plan on giving the funds to. Will it be "everybody's sweetheart" Lou Ann Metz or perhaps my buddy Mark Freedman? Oh wait, that's right, Freedman is busy trying to ensure no more patients die in his current stem cell study. It's a shame that the ten million didn't go to a truly non profit MS organization (Direct-MS)Will all the ten million go to the CCSVI study or will they use some of it for "other MS studies"? I don't feel that they should be duplicating what BNAC has already done, so what are they planning on doing? I think they should do a study where they have groups of non MS people and half the group gets their jugulars clamped shut and the the other half do not. It would be great if they chose subjects from the CMSS so they could experience firsthand what it's like to not have proper blood flow from the brain. I might even donate some money to see that one!

May 3 Update

2010-05-03T09:13:00.000-07:00

Something that I had noticed since having the treatment that I didn't bother to add to my list of "perks" was the problem I had post op with aspirating my saliva and choking on it. I noticed this seemed to stop after my treatment but I hadn't realized that it may be attributed to my MS before now. This choking usually happened at least once a day but I figured I was just a clutz and it was "just something I did".

Well yesterday I was eating Jr. Mints and I started to choke. Usually my air passages don't close completely off and I'm able to breath through my nose until my throat clears. This time that didn't happen. My airway was completely blocked and I was gesturing madly to my youngest son to help me. He tried to Heimlich me but there was nothing lodged in my throat. It was just saliva that I had aspirated and it caused my airway to close off. My life did not pass before my eyes but I kept thinking "I'm going to die right now". Somehow, the airway opened up and I began to take wheezing gasps of air and cough.

So is this an MS thing? From everything I have heard from other MS'ers, I kind of think it is.

Some Folks Have Asked Why I Paid 10K Dollars To Get Warm Feet

2010-05-02T08:32:00.000-07:00

I have been hearing some crazy comments about the liberation treatment and I would like to clear some of them up. I know a Doctor who has been asking patients "Why would you pay $10,000.00 to get warm feet?" I paid $10,000.00 and went to Poland to be liberated because my own country refused to treat me. It was my hope that the treatment would stop progression and further attacks. That was all I was hoping for. My warm feet and hands were just a wonderful bonus as far as I'm concerned.

In addition to that perk I also regained my balance and lost spasticity in my legs and feet. For years I had neck and shoulder pain and stiffness that I thought was due to a car accident I had a number of years ago. Well guess what? It was spasticity. After my treatment my neck and shoulder loosened up! My right leg was my weakest and I walked with a limp and had foot drop as well. I would fall down several times a day as my leg got fatigued. This disappeared as well. I can walk much further now before my right leg gets tired. It's still weaker than my left but I'm hoping that with time it will get better. The numbness and tingling on the right side of my body has gone also, along with my terrible heat intolerance.

I know so many people who have had the treatment and are experiencing the same things. Even people that were a lot worse off than myself are finding that they no longer need their wheelchairs and walking aids. They have fired their home care helpers.How can someone so callously imply that the treatment will only give you warm hands and feet?

Another comment I keep hearing is the treatment wont help SPMS or PPMS patients. I believe this is incorrect. If the treatment can stop further attacks and halt progression of the disease I would say that is a huge benefit for PPMS and SPMS patients. Perhaps they wont have the "perks" that so many of the RRMS patients enjoy but maybe that is due to the extent of their neurological damage.

It will be many years before we will know if the attacks and progression have been stopped for certain, but I and many others are willing to take that leap of faith. Dr. Zamboni's wife is reportedly doing extremely well and she had the treatment a few years ago. I also heard that she is NOT taking MS drugs but I cannot verify that information at this time.

Can all of this be placebo effect? Doubtful. Bladder and bowel function, along with balance and gait cannot be effected by our minds. Could we have gone into spontaneous remissions, all at the same time right after the treatment? I wonder. If that could be true then why hasn't this phenomena occurred with any of the drug treatments we Ms patients have been paying big bucks for?

Based on the current research and overwhelming anecdotal evidence I believe the treatment is helping. This is why I am fighting to get our government to help fund and fast track the research so all Canadians with MS can have warm feet.

Is CCSVI Junk Science OR Is Rose Just Bitter & Twisted?

2010-04-28T14:39:00.000-07:00

It seem wherever I go on Face Book these days, to catch up on the world of CCSVI, I see postings from a gent who claims to be a medical doctor. I Googled Colin Rose and the results are a practicing cardiologist from Montreal, PQ who went to McGill University. According to this article Dr. Rose is against angioplasty. Click Here Another search says Rose is also an Associate Professor of Medicine at McGill. Another search brought me to a web site called " Panaceia or Hygeia". There was an article dated April 10, 2010 and it prattles on about how ignorant Avis Favaro of CTV is for bringing Dr. Zamboni's theory to the public. He jabbers on further claiming Kuwait can afford to fund a scientifically absurd treatment, while bemoaning the Quebec tax hike to cover health costs. This certainly sounds like it could be the same Colin Rose that creeps around Face Book all day.

One thing I don't get is if Rose is practicing cardiology and busy on his web site, how does he find the time to slither in and out of all the various FB CCSVI groups and get any work done? What always strikes me as extremely peculiar is if Rose on FB is actually Dr. Colin Rose then why doesn't he fund a study on CCSVI or at least join one and then prove that it is indeed "junk science" once and for all?

I don't know about you but when I'm on FB I get so sick of reading his whinny, jibber- jabber, naysaying I could just puke.

HELLO CANADA!!! KUWAIT IS TREATING ALL IT'S CITIZEN'S WITH BLOCKED VEINS RIGHT NOW!!!!!

2010-04-27T09:22:00.000-07:00

For a full report CLICK HERE.

I am thoroughly DISGUSTED right now. How easy it all seems to divorce MS from the equation and just treat the venous disorder. Obviously the Kuwait government has intelligent and sensible people working for it, unlike our wonderful country.

I don't understand how neurologists can demand double blind studies for a non drug treatment. Why are the Americans and Canadians kowtowing to this ridiculous notion?
Did the first heart bypass surgery have to jump through so many needless hoops before it was approved? Did the researches have to perform double blinded studies? How does one do a double blinded study for heart bypass? That would mean surgically opening up the chests of a group of people and pretending to do the bypass. Wow! I don't think it happened like that.

So why is CCSVI and the liberation treatment being waylayed? We all must scream and yell at the top of our lungs that we want scans and treatment NOW! MS patients are being discriminated against by being refused testing and treatment for a vascular disorder. The angioplasty that is performed is a minimally invasive, half hour to forty-five minute, day surgery procedure where the patient is awake. Angioplasties of the jugulars are done every day in kidney dialysis patients who suffer from collapsing jugulars.

We all must lobby for our rights to be treated now. On May 5 I will be marching outside of McDougall Centre in Calgary, to show the province that we mean business.
Please join me and and my friends. Many CCSVI groups across Canada will be holding rallies as well. For more information please contact me at gingermacqueen@shaw.ca

Boycott The Canadian MS Society This Year

2010-04-26T17:24:00.001-07:00

Until we see that the Canadian MS Society is really behind CCSVI research I am urging everyone to say NO to the walk this year. The Canadian MS Society has grudgingly given a grant for CCSVI as a token gesture. One hundred thousand dollars per year for two years. That's it. Nothing more. Surely they must think the public are idiots when we all know it take millions of research dollars to fund a study properly. Please watch my video. Click Here.

Video Health Update

2010-04-26T13:57:00.001-07:00

Lots of people wanted to "see" how I was doing so here it is.

Click Here

24 Days Post Op

2010-04-23T10:30:00.000-07:00

I decided I needed a break and took off on a road trip with my two dogs to Ft. Saskatchewan to hang out with my best friend and celebrate her son's 10th birthday. I remember the day Braxton was born as I was in the delivery room. I was also dealing with being newly diagnosed with MS too. Man! That seems like such a long time ago!

Today I'm going to lunch in Edmonton and will meet Brenda and Misty for lunch at Chili's. I can't wait as we've only chatted on Face Book but I feel like we're old friends. Misty and Brenda have yet to be liberated.

So to update how I'm doing health wise it's pretty much the same as it was last report. I did notice on a warmer day (about 25 Celsius) that my right leg, which is my weakest, got a bit stiff and slightly uncomfortable in the heat. Nothing like I use to get though. I was extremely intolerant of the heat prior to the treatment. I was essentially a prisoner in my air conditioned home all summer long.

I am dreaming about running almost every night now. My sub conscious has really grabbed hold of the treatment and running thing! Who knows if I will ever run again? I'm hoping my legs get stronger but they may just stay like this. I'm cool with that, though. As long as this treatment stops the attacks and progression I am content with the gifts I've so far received from it.

May 5 is just around the corner and when I get home I will be planning our Calgary march with the CCSVI Calgary group. I'm really hoping that everyone in Canada, who has MS or a loved one with it,gets out on the 5th and shows their support for CCSVI. Even if you can't march you can wear a tee shirt or put a sticker on your car.

17 Days Post Op and I Have Been Given a Gift

2010-04-17T13:37:00.000-07:00

So today I rode my bike! I'm still in disbelief. I never thought in my widest dreams I would ride a 2 wheeled bike again. One thing I have noticed the last couple nights is my sleep is much deeper and longer than I have had in years. I feel more rested and full of energy when I wake up. I have been suffering from a sinus cold the last few days and usually I would have no energy and my symptoms would be exacerbating but I feel great!

Not too long after riding my bike, my right leg got it's energy back extremely quickly,I decided to wash down the outside of our house. I did it with no problems!! Usually my right leg would get fatigued and I would be limping and the sun would make me dizzy. My right hand would get extremely numb and painful too. This time I was spraying the house and craning my neck to look up at the second story as my hose sprayed it down and I realized I am standing on uneven ground with my head arched all the way back to look up and I'm not falling down! WOW! I honestly never thought I would be able to do this again either! Will I be able to landscape our yard this summer with my husband? I think I will. I know that sounds so goofy to someone who doesn't have MS but for me it's like a gift from the powers that be and I am SO GRATEFUL. Tears of Joy are running down my face right now. I wish the naysayers could see me now. WE MUST GET THIS TREATMENT OUT IN THE MAINSTREAM AS QUICKLY AS POSSIBLE.

I jusr rode my bicycle and didn't fall down!

2010-04-17T11:45:00.000-07:00

Ok. I am soo excited!! I was able to ride my bike about 4km and I didn't get vertigo or fall down once! In the recent past, prior to my treatment, I would start to ride and then suddenly vertigo would hit me like a brick wall and I would fall over on my side. Not this time!!!!

My right leg is my weakest link right now and it did get tired and weak and it was hard to lift my right leg high enough to swing it over the seat and mount and dismount. I will keep working on getting more strength in my legs, especially the right one. I am still kind of in shock, really. This is way more than I had hoped for post op.

The temperature was pretty warm too and usually when I exert myself physically and work up a sweat my symptoms exacerbate and I get dizzy from the heat. This did NOT happen today.

16 Days Post Op

2010-04-16T16:24:00.000-07:00

I took my my dogs to the off leash park this afternoon. I noticed that after walking about 1km my right leg (the weakest one) got heavy and felt weak. I started to have a slight limp as the fatigue set in. The temperature wasn't too hot-(about 15 Celsius).
I was hoping it would have gotten warmer so I could see if I still was intolerant to heat.

My legs are much improved since the liberation treatment and I am hoping that they will continue to improve as I build up the strength in them, again. I filled the tires with air on my bike today as I was going to try to go for a ride. I haven't ridden my bike in a few years because of my balance. I got talking with my neighbor instead, and ended up not going today. I will try tomorrow.

The Video of my CBC Journey to Poland and CCSVI Treatment

2010-04-14T12:12:00.000-07:00

Click this link

The CCSVI Revolution in Canada Is In Full Swing Now!

2010-04-13T09:51:00.000-07:00

WOW!I have received such an overwhelming positive response to CBC's The National report on my journey to Poland for CCSVI treatment. All morning since 8AM I have been answering the phone, emails and Face Book posts. It's just about 11am now and I'm mostly caught up now. I want to thank everyone for their support before and after my treatment and especially CBC's Dave McIntosh and Kelly Crowe for their exceptionally professional journalism.

It is my hope that this show will spread the CCSVI concept even further to interventional radiologists and other medical professionals and spark an interest so that they will want to look into the viability of offering the procedures in the not too distant future. I am hoping insurance companies were watching and understood the financial implications of CCSVI treatment vs. ineffective, expensive drugs. I also wish that members of our health care system were watching and were able to digest the truth about CCSVI treatment. I hope that by showing my entire procedure on TV a lot of the fear and trepidation surrounding CCSVI treatment will be lessened or eliminated.

With all that said I am happy to say that the CCSVI Revolution is in full swing in Canada. Our local group,"CCSVI Calgary" held a protest at the Calgary MS Clinic on April 9 and we received a lot of media attention. On May 5th many CCSVI advocacy groups will be holding marches and rallys across Canada to show their support for CCSVI and their disdain for the ignorant naysaying by our MS Societies, provincial health care and government officials.

Coincidentally, May 5th is celebrated in Mexico as "Cinco de Mayo".(Spanish for "fifth of May") The holiday commemorates the Mexican army's unlikely victory over French forces at the Battle of Puebla on May 5, 1862, under the leadership of Mexican General Ignacio Zaragoza Seguín. We too are in a battle for our rights to have this promising treatment for MS in our own country.

Please sign my GLOBAL PETITION that will be sent to Canadian Provincial Health Care and the Health Minister. This is a "global" petition so anyone from anywhere can sign it. You DO NOT have to donate any money. Just log out at that point. Thank you.

For more information on how to join or start a group for the march in your area go to msliberation.ca

To join our Calgary CCSVI group CLICK HERE

For CCSVI tee shirts CLICK HERE http://ccsviworldwidevictory.com/STORE.aspx

More Tee Shirts from CCSVI UBC

Just for fun add an MS HOPE sticker to your FB profile pic. CLICK HERE

12 Days Post Op and Im Going To Talk about My Sex Life

2010-04-11T09:07:00.000-07:00

I haven't noticed any "big" changes since my first posting after the treatment. I have, however, started noticing subtle changes in my body in the last couple days. My sense of smell seems more acute as does my sense of taste. It's like after you quit smoking and all of a sudden you can smell and taste things you never did before. Well I could smell and taste before the treatment and didn't notice anything "off" with those senses pretreatment, but in retrospect, they must have been dulled to a point. I forgot one thing: Last night I was talking on the phone with my friend Karla and I was telling her how I tried to walk heel to toe in a straight line the other day and succeeded! I tried it again, while on the phone , and was able to do it again. I have to move slowly to accomplish it, though. Prior to my treatment I could not even do the heel to toe stance without falling over! lol

One thing my husband wanted to know post op was if sex felt any different/better. At first I didn't think it felt any different as I never really experienced the dysfunction that others have. I have felt that as a couple we have enjoyed a great sex life despite my MS. What I have recently noticed during sex is that because the right side of my body is no longer full of spasticity and numbness, I enjoy my husband's touch a lot more. He says that when he touches my right thigh it doesn't feel like a hard band anymore. He can feel the softness and individual muscles now.
I know mentally I feel more empowered and less inhibited because I feel that invisible ax that was always looming over my head is gone. I can see that my husband is more relaxed and happy now, post op, and it definitely has increased his libido. The only slight problem I have with that at the moment is my giant bruise from the the angio incision in my groin is still pretty painful but I'm not letting that slow us down.

A New Lease On Life

2010-04-09T07:04:00.000-07:00

I figure that by having the procedure and feeling so many benefits from it that I owe it to my body to treat it like a temple. It sounds douchey and cliche', I know...
I feel like I have a second chance at taking better care of myself and this time I'm damn well going to do it! I am going to look into Ashton Embry's MS diet that so many people swear by. www.direct-ms.org I am also going to try "Lion's Mane Mushrooms as they reportedly have been medically researched and found to help the generation of myelin. I'm also going to stay on my 4.5mg of LDN for awhile too.

I keep thinking of that British woman who had her face eaten off by a dog and then was given a "new face" by some kind hearted plastic surgeons who performed it pro bono. She reportedly started smoking cigarettes, again, as soon as they sewed her new lips back on. I think that is like spitting on a gift and I do not want to do the same with mine.

Making the Powers That Be Extremeley Nervous

2010-04-08T09:31:00.001-07:00

I just got a call from Bob Stenhouse at Alberta Health Services about my blog post of April 1. Apparently my emotionally fed choice of words were taken literally and I was asked to clarify my intent. I told Bob that I, in no way, advocated physical harm to any of those people or their organizations and I meant it. It is their narrow minded views of CCSVI that I am intent on fighting against. Again, only figuratively.

1 Week Post Op Update

2010-04-06T12:43:00.000-07:00

I saw my GP today and told him I went to Poland for the treatment. He was actually happy for me! I gave him a copy of my procedure CD as he has been very interested in CCSVI since first hearing about it.I told him that Dr. Simka and Dr. Ludyga both agree that the MRV and Doppler are not diagnostic in assessing CCSVI. They only give a possible indication of reflux and blockages. The gold standard is the VENOGRAM.

Today is exactly 1 week since my treatment in Poland and I feel great! I haven't noticed any more positive changes since I first reported on post op day 1. I thought I would give it a go at the gym yesterday, and was able to complete my normal work out, but I had hoped I could try to re learn how to run on the treadmill too. After my regular routine I was pretty bagged so I gave the treadmill a miss.

Thanks to all my concerned friends that have messaged and phoned me and told me to slow down and rest. I had a stent installed in my left jug and really don't want to dislodge it. So thanks for the sane advice! It's just hard to hold myself back because I want wear a pair of thigh high hooker boots with 5 inch heels and dance on the bar!

A Slow but Certain Massacre

2010-04-04T06:36:00.000-07:00

I have been doing a lot of thinking since arriving home from Poland after being liberated. My experience in Katowice was wonderful and I met many people, who like me, were forced to leave their countries because medical attention for their blocked jugulars was denied. The fact that many MS Societies all over the world, including Canada, are spreading doubt and lies about CCSVI and it's treatment are a travesty. I heard a story from a family from Holland that the MS Society there is telling people it is too dangerous to travel to Poland as it's a third world country and many people have been killed by Dr. Simka and his team. I keep hearing the erroneous story about the patient from Stanford who died from the liberation procedure, when in fact, she had an unrelated aneurysm of her brain, and bled out.

All these crazy stories that are being circulated are meant to scare us into not seeking treatment for a serious and debilitating condition. Why? I believe it has to with greed on the part of the pharmaceutical companies and the MS Societies and health professionals who make a tidy profit off our illness. If CCSVI and the liberation treatment gets the world wide press it deserves, what do you think will happen to the profit margins of Big Pharma? New oral drugs for the treatment of MS symptoms are set to come on the market soon and if investors knew the real story about CCSVI I'm certain it would create fear and doubt in the minds of the investors and consequently cause a huge market drop. Companies like Teva who only cater to treating the symptoms of MS would go under. Many other companies would show huge profit losses and the research grants and kick backs would dry up. The treatment of MS is a multi billion dollar business and CCSVI threatens to destroy it.

Because of the fact that our Canadian MS Society is doing everything in it's power to quash the CCSVI movement, thousands of it's supporters have turned their backs and closed their wallets to them because they know the MS Society has been doing everything in it's power to discredit CCSVI as they fear the inevitable loss of revenue from Big Pharma. Paid employees of the National MS Society of Canada, such as April Royale will argue and state that the Canadian MS Society IS giving money for CCSVI research. This is true. What Ms. Royale fails to mention is that the grants are in $100,000.00 increments. Basically, this means that a researcher can apply for, and receive from the Canadian MS Society, only $100,000.00 to conduct research on CCSVI. In the world of research that small amount of money is a pittance and obviously a token gesture by the Canadian MS Society. Ms. Royale and all the paid employees of the Canadian MS Society know full well that it takes millions of dollars in order to adequately fund and carry out research.

In Alberta and across Canada, provincial health care is denying CCSVI scanning coverage for patients with MS. Dr. Robert Sevick is the head of Alberta Health's Radiology section, and a key person that wields the power to allow CCSVI scanning in Alberta. Curiously, after CTV's W5 presentation in November of Dr. Zamboni's breakthrough, I was told by a radiology tech at Mayfair clinic in Calgary, that they received a letter from Alberta Health Services stating that they should cease and desist CCSVI scanning for MS patients and return the requisition form to the issuing Doctor. I was shocked and saddened because just a couple weeks prior to this e mail, Mayfair was working hard to be able to offer CCSVI scanning. I asked the Mayfair tech why a private clinic such as Mayfair would follow these directives as they were a privately owned diagnostic imaging centre. She told me that the letter stated that CCSVI was unproven and that the radiologists were afraid of diagnosing an unproven ailment so they opted to wait it out. I called Dr. Sevick's office after this and was told by his receptionist that she and Dr. Sevick knew nothing of this letter. So why would Mayfair lie about receiving something like that? A few weeks later AHC published a statement about CCSVI, so closely worded to that letter, that I nearly spit out the coffee I was drinking.

Health professionals that we have depended on to let us know about medical breakthroughs, treatments and education are seemingly turning their backs on CCSVI before research can even begin. Despite the fact that Dr. Zivadinov and Dr. Weinstock-Guttman have produced promising preliminary data in the BNAC study for CCSVI, many Doctors refuse to acknowledge it. Dr. Lou Ann Metz, Director of the Calgary MS Clinic has seemingly gone out of her way to discredit Dr. Zamboni's work and whine about being deluged with MS patients calling about CCSVI. In a newspaper article published in the National Post and written by Tom Blackwell, Metz laments about angry patients calling and tying up the clinic phone lines and worries that we will all be crushed when CCSVI turns out to be a "medical dead end". Metz has said many negative things about CCSVI in the past few months, including calling CCSVI "quackery" I am told. The irony of this situation is that the Calgary MS Clinic phoned me a few weeks ago to ask if I would be interested in taking part in an MS study about how physical activity using a Nintendo Wii Fit impacts people with MS. I asked the girl phoning me if this was a joke. Nope. It was real. I asked her how a ridiculous study such as this gets multi million dollar funding and CCSVI is barely on the radar. I told her I was appalled and insulted and that the Doctor(s) heading the study should be ashamed. She replied that she would take me off the list of potential research subjects and that they wouldn't be bothering me again.

It is my firm belief that, in the interest of the almighty dollar,Canadian MS patients are being denied medical testing and research is being dismissed and discredited. The Kurtzke Expanded Disability Status Scale, or EDSS, that Neurologists use to quantify disability of an MS patient ranges from zero to ten. It starts at zero being normal and ends in 10 being "death due to MS". Based on the EDSS it is a well known fact that death is the final outcome of multiple sclerosis yet, when there is finally a promising, non drug treatment on the horizon, every attempt is made by the greedy to stamp it out. This is nothing short of man slaughter and the people and organizations responsible for this heinous crime should be held accountable.

Now I'm Pissed Off!

2010-04-01T00:23:00.000-07:00

I had the Liberation surgery on March 30 in Poland. After a couple days reflection I am FURIOUS! First of all the "surgery" is so simple and benign it should only be called a procedure. After experiencing, first hand, the procedure I am shocked and pissed off that we are not at least doing more research on CCSVI in Canada. We all know who to thank for that stumbling block! Lou Ann Metz, Dr. Robert Sevick and April Royale better watch their asses as I'm taking off the gloves and out for blood as soon as I get home!

While in Poland I have heard crazy, horrifying stories of how the MSS of our world are doing everything in their power to stop CCSVI. I met some people from Holland as their son Youri was here being liberated, and they told me that their MSS is telling people that Poland is a dangerous 3rd world country and Dr. Simka is killing people.

Furious does not begin to describe how I felt after hearing that. My tattoos were more invasive and painful than this procedure. I think about ALL the people with MS that WILL benefit from this and I am sick! As soon as I get home I'm going for their jugulars, and not in a nice way.

I am hoping that everyone will join me in my assault against the people and organizations around the world denying us this simple yet lifesaving procedure.

1 Day Post Op

2010-03-31T01:51:00.000-07:00

OK. Wow. So yesterday was March 30th and Steve and mine's 6th wedding anniversary. It was also my liberation surgery day. I arrived at the Euromedic Hospital at 8am. Everything was extremely casual compared to the ritualistic breakdown from citizen to patient that one experiences in North American Hospitals. Upon my arrival I was showed to my room which smelled of disinfectant and rubbing alcohol. The entire room, including my wash room was impeccably clean. I filled out paperwork and gave some blood and dressed in the surgical gown.I was hooked up to a saline IV to keep me (presumably) hydrated. It was a bit unnerving as the gown is open in the front so the nurses can attach the various electrodes to my body. While this was all going on the CBC camera was rolling and my left boob made an appearance. I hope to God they cut that out or at least blur it. Now I have something in common with Janet Jackson. lol

I was walked across the hall to the operating room and was made to lie on a surgical table. Dr. Luyega injected my right upper thigh with anesthetic and I was given a mild sedative and oxygen to breath. Next thing I knew a TV screen is showing a wire snaking through my veins up to my jugulars in my neck. He next injected the contrast dye to visualize the vein and blockage. He then inflated the balloon on the catheter in my vein. I had a strong pressure in my neck and right ear. I felt some pain and heard cracking and popping inside my ear. This sensation lasted maybe 45 seconds. He then moved the wire to my left jugular, injected the dye and inflated the balloon. This time I experienced extreme pressure and pain in my neck, ear and entire left jaw. This lasted about 60 seconds. Dr. Luyega was unable to open the vein completely with the balloon so he installed a stent. I`ts some kind of metal mesh cylinder measuring approximately 4cm in length and 12mm in diameter. It is located in my sub clavicle area. The whole surgery lasted about an hour. I was wheeled back to my room and put in my bed and told to lie flat for 6 hours so a hematoma wont develop at the injection site. I was finally given a cup of coffee and something to eat after having fasted all morning. I stayed overnight at the hospital and was taken care of by non English speaking nurse who, nevertheless, took great care of me. The cool thing was they didn't bug you every hour through the night like they do in Canadian hospitals. The entire operation was less invasive and less painful than getting a tattoo. I forgot to mention that while I was in the operating room getting angioplasty, my right hand that that has always had 2 numb fingers woke up! No more numbness at all. My hand is completely normal. I can now look forward to the remaining days of my life with renewed hope; I have been liberated.

April29 Im in Katowice Poland

2010-03-29T02:19:00.001-07:00

My husband and I arrived yesterday evening in Katowice and were met by the tv crew from CBC and our driver "Matchick" from EuroMedic. I am spelling his name phonetically as I am certain it would be some unpronouncable, consonant stuffed crazy word. Last night when we got to our hotel (Qubus) we went to dinner at the Toscana restaurant in the hotel. It was the best Italian restaurant my husband and I have ever eaten at and the prices were unbeleivably inexpensive. Our driver and the other drivers from Euromedic came for dinner as did two couples who are here for the surgery and we all sat together. One couple was from Calgary and the other from the UK.

This morning I went down to the free continental breakfast in the hotel restaurant and met Dr. Ludyega. He was an extremely nice man and the vascular surgeon who will be doing my liberation procedure tomorrow. I had many questions about stents as this was my main worry before I got here and he answered them clearly and to my satisfaction. It is so unbeleivably refreshing to have a Doctor take the time to talk candidly to me. My MRI is today at 2:15 and our wonderful driver will be here at 1:15 to pick me up. Dave and Kelly from CBC will be meeting us in the lobby prior to our departure to discuss the MRI. They will be following us to the hospital called VOXEL and film the entire procedure.

So far everyone we have met here in Katowice has been exceptionally friendly and helpful and I feel secure and confident about my impending angioplasty.

Poland Or Bust

2010-03-24T07:12:00.000-07:00

Today is exactly 6 days before my surgery date with Dr. Simka. I have a lot going through my head and need an outlet so I will write a post.

Last night I met a lady from Croatia who is in Calgary visiting family. This is no ordinary visit as she has MS and came specifically to be scanned at False Creek in Vancouver for CCSVI. Her aunt is a wonderful woman who cares for her deeply and worries about her because there is very little treatment available in Croatia for MS. Even though I could not speak her language and she could not speak mine, her aunt translated for us, and we found that we have so much in common it was scary. She too is waiting for the liberation surgery and eager to start a new life once this is all behind us.

The last few days I have been obsessed with stents as I'm worried that I may need one or two. My problem is that the stents being used are not designed for jugular vein use and that worries me. I did a previous post all about stents so if you are interested please read that. Today I will be talking to a person from Research and Development at a stent manufacturer about the need for vascular stents for jugulars. It is my hope that I will plant a seed in this persons head and they will endeavour to build a jugular stent.

I also started a global petition that I intend on sending to the Health Minister and our provincial health care. The petition simply states that CCSVI scans should be available and covered by our health care and we are asking for more funding to go to CCSVI research. If you haven't already signed it please do so now. There is a link on my blog to the petition. FYI: after you sign it you are asked if you want to make a donation. That is not for CCSVI and you do not have to donate. Just log out.

I started working with a local group of folks in Calgary, on line and in the community, and we are called CCSVI Calgary. We have a Face Book page so please visit and join. I am hoping that by bringing the fight for CCSVI out of the virtual world and into the physical, we would be one step closer to achieving our goals. I just hope that we don't end up becoming an MS Society clone.

In closing, I want to thank everybody who has supported me up to this point on my blog and in my quest for liberation. I apologize to my wonderful family for being so obsessed these past few months and I promise that once I get back from Poland I will ensure I have more balance in my daily life. Ha! No pun intended. This journey has been wonderful and I'm sad to see it end. I am elated that I'm getting surgery-Don't get me wrong! It's just that having HOPE these past few months and working with so many amazing, talented and caring people I don't want it to end! HOPE feels wonderful! I denied myself hope for so many years after being diagnosed that it's almost like an addictive drug to me right now. I'm sure a lot of you feel that way too. By saying this I don't mean to imply that I am done with helping the CCSVI movement. On the contrary! My new hope is that I will be healthy and able to kick more ass on behalf of all my friends! I will continue posting to my blog as I want to chronicle how I feel afterward and and note if there is any improvement. I will do my best to post when I'm in Poland to keep everyone updated. See you (virtually) in Poland!

Link To Sign European Parliament Petition for LDN

2010-03-22T14:09:00.001-07:00

Click Here

Please sign this petition to our Canadian government about CCSVI

2010-03-22T12:57:00.001-07:00

Click Here

To Stent or No to Stent. That Is My Next Question.

2010-03-15T13:54:00.001-07:00

After hearing my results from the Doppler ultrasound scan on March 3. I'm wondering if I will require a stent or two. I have been studying everything I can get my hands on about them as many Doctors have cautioned against vascular stenting. For a quick run down on stents and the the basic procedure click this LINK.

I was told by a Doctor that the angioplasty will damage my valves as the catheter is threaded through the valve up into my jugular. He said that in the beginning I will have reduced MS symptoms because the blood is finally draining from my brain but eventually, he tells me,the brain will adapt to the change and the inter-cranial pressure will change and cause more problems.

My thinking is that if CCSVI is congenital, (I've had it since birth), then all my life my body has been trying to adapt and work around this problem with my brain's blood drainage. I think that because I have valve issues and they seem to be flowing intermittently, that is maybe why I still have RRMS after all these years. I am able to get some blood drainage so the damage is not as devastating as someone who has complete blockage.

So getting back to the inter-cranial pressure problem. I know that my brain pressure and function are already operating in a modified fashion because of the valve issue so if I open up the valves (which basically happens when a catheter is jammed through them), and get 100% blood drainage vs. intermittent, I don't see how that is bad. I figure good blood flow is better than no blood no flow. Right? My jugulars are functioning properly in the sense that they have no blockages and they collapse when I sit up as they are suppose to. I think my brain will adjust the pressure accordingly. (I hope) Where is Myth Busters when you need them? I want to do a science experiment using sausage casings or even PVC tubing and try to replicate the function of the jugulars, cranial pressure and valves at work and see what would happen. If I open the jugular valves will the inter-cranial pressure increase over time and blow up my head? I hope not.

When I get to Poland I will talk with Dr. Simka and maybe I wont even need a stent? Then I worry that I could re-stenose if I don't have one. I will discuss the pros and cons with Dr. Simka. I recently heard about a stent called a "Night Naw" and I will ask about that. This is going to be a big decision should the Doctor say I need one. There is a risk of it migrating too. Well, I will keep researching until I get to Poland. I know it's just a matter of time before the vascular surgeons get on board and develop a jugular stent.

Link for more info on stents

Please Join Our NEW FB Group: CCSVI Galgary

2010-03-10T15:09:00.000-08:00

Click this link

My Written Doppler Ultrasound Report From False Creek by Dr. Cooperberg

2010-03-09T18:30:00.000-08:00

I will be posting the images from the US scan in a few days. The findings are:
"
Intermittent abnormality of flow through internal jugular venous valve on the left side and less prominent but also intermittent on the right side. This is not definitely abnormal but at least part of the time looked somewhat abnormal."

Check Out this Link on CCSVI Scans, Surgery and More!

2010-03-08T07:41:00.000-08:00

MS SURGERY

Facebook Nazis

2010-03-07T11:21:00.000-08:00

I have been on Face Book and assorted web sites since the end of November '09 for an average of 7 hours a day, 7 days a week. If it had not been for all these wonderful FB groups and web sites I would not know very much about CCSVI today. Over the past few months my personal experience in dealing with the Canadian MS Society and MS clinic has been sadly deteriorating due to the fact that I have confronted them about there extremely negative stance towards CCSVI. I know quite a few other Canadians who have had similar experiences since the W5/CTV story broke. Our health care system is a socialistic pile of crap run by our government who is too afraid to move an inch on the CCSVI front without the Canadian National MS Societies approval. We are currently at stale mate in this regard.

Because of this I have turned to new avenues such as vascular surgeons and interventional radiologists. I have been and will continue to send information about CCSVI to these Doctors in the hopes that they will look into it and consider doing their own research or just trying the damned surgery. I know the "wheelchair Kamikaze" is getting scanned and, hopefully, surgery if he's operable in New York. I know Mark Godley at False Creek is lobbying the medical professionals and Universities to start doing the surgeries in Canada. I understand that if a private hospital does the surgery they don't need a medical board approval like a University hospital would. Very promising!

What makes me sad and upset is a FB group I had joined and learned a lot from and met many people has seemingly changed it's course. I no longer feel welcome and the constant chastising and berating being doled out by the admin's is rubbing me the wrong way. Maybe I have just changed my course by becoming an activist, in and out of the virtual world, and maybe it's just me who has changed? Hard to know.

What I do know is that the admin has had the surgery and is "fixed up". SO maybe fighting for our cause is not so enticing since they already are on the road to recovery. They can afford to sit back and take their time. I do know that Canadian health care and US health care are completely different animals and I have tried to educate this American person that sometimes Canadians need drama to get other Canadians going as we can be an ambivalent lot. I even apologised for my anti MS Society talk in their group.

Well today another post appeared in this group chastising it's members yet again for more FB sins. I always thought that these groups were for voicing our thoughts, frustration, anger, love, ideas etc. The sad thing is as soon as one of this person's chastising posts go up all the sycophants rush to the comments and write "OH we are sorry! You are soo right! Please forgive us!" What has happened to freedom of thought? I am no longer going to participate in that group as I feel they only want good little sheep as members. Ironic when one of the things we are trying to do is get Doctors to think outside the box and denounce the medical status quo.

Getting Scanned at False Creek Vancouver (the sequal)

2010-03-07T08:41:00.000-08:00

On March 3 I flew to back to Vancouver's False Creek to have some sequences of my MRV re done and to have the ultrasound for the first time. Back in December I went to False Creek and just had the MRV done as I didn't know enough and thought the MRV would be diagnostic in finding blockages. Not so! Dr. Simka of Poland diagnoses people almost exclusively using just the Doppler ultrasound. He uses the MRV when he needs further confirmation after doing the ultrasound. Interesting! I wish I had known that back in December! Oh, wait a minute. I take that back. They didn't really know what they were doing in December. Because I had my reservations about that MRV I sent my CD's to Dr. Simka after receiving an ambiguous written report from FC. The reason I was so worried was that I am already booked for surgery with Dr. S on March 30 so I wanted to be certain that I had operable blockages.Dr. S wrote back and said he couldn't tell anything because a bunch of sequences were done wrong or missing. I called FC and they immediately offered to pay for my flight back to Vancouver and re scan me for free. I was happy to do so as now I would have the opportunity to get the Doppler that I didn't get the first time. I was also told Dr. Simka was there visiting the clinic and teaching Dr. Cooperberg a new technique to scanning. I was so happy as I hoped Dr. S would do my scan.

When I arrived I was told Dr. S was not there that day. Oh well. I had the ultrasound at 3pm with Dr. Cooperberg. This was my impression of him: He said he only worked part time scanning people but recently, had to start working more hours because of the CCSVI demand. SO my scan man is semi retired. I asked about his time spent with Dr. S. He said he learned a lot. He said that what he was seeing as a normal scan, prior to being taught by Dr. S, Dr. S saw as abnormal. This made me go huh? SO now I'm thinking does he know what he's doing? I wish Dr. S was here. I don't have a lot of confidence in this Dr. C. I liked the fact that he was not pro or con about CCSVI as I felt I would be getting an unbiased scan. (if he did it properly) So we did the scan. He did my left side of my neck first in the lying down position. It is exactly like a pregnancy ultrasound except you don't have to drink all that water! At first he said he found abnormal flow but then when he went back over the same spot he couldn't get the same response from his machine so he said it was normal. Then we did the right side. He said that he was getting abnormal flow indications and when he went down to my clavicle (collarbone) he thought that the valve down there was fluttering. I asked what that meant. He said it was an abnormality of function. He scanned my azygos and didn't seem to find anything extraordinary. In the sitting up position both my jugulars collapsed as they are meant to. So that was normal. My scan lasted about 15 minutes in total. I asked Dr. C if he thought I was operable. He thought I was based on what he had learned from Dr. S yesterday. He went on to say that he would probably be re doing people's scans for a long time now as he had not been doing them properly up to this point.

I still didn't have faith in him so I asked if Dr. S would be reviewing my scan. He said Dr. S was coming back that Friday and he would show Dr. S my scans. I asked Dr. C if he ever scanned normal people without MS to compare MS people's scans to. He said he had scanned his own neck the other day and put the scan in anonymously with the other patient scans that Dr. S would be reviewing. I was glad to hear that because I was wondering if Dr. S simply told everyone they had blockages if they had MS. But then if he was out to scam people wouldn't he have just told me I had blockages when I sent him my MRV CD's?

So now On Monday, tomorrow, I'm going to call FC and ask for Dr. Simka's word on my Doppler. After all, to find out if I am operable is the main reason I went to FC in the first place! I have included a You Tube Video by another lady who had a similar experience at FC. VIDEO

UPDATE

Today is March 08 and I put in a phone call to FC. Dr. C is on vacation. I'm just a little frazzled and disgruntled as I have been waiting for a definitive answer since Dec. 22. I just got a message from FC and was told that they were sorry Dr. C could not give me a definitive answer but I DO have blockages and they recommend going ahead with my surgery appointment in Poland. I don't want to knock FC because they are doing what very few clinics in Canada have had the equipment and balls to do and Dr. Mark Godley is trying to get the world out to the medical world about CCSVI and help us get treated in our own countries. The only thing I think is wrong with this picture is they are charging a premium for a mediocre service. Many people have been erroneously told they have no blockages. I only hope those people sent their scans for a 2nd opinion elsewhere. If they didn't, they may be sitting at home right now without any hope. That is tragic! I think FC should lower their prices until they are 100% up to speed.

UPDATE March 13

After having a lengthy discussion via e mail with a representative of False Creek I have a more realistic and better sense of the whole picture. My expectations were unrealistic and I realize that now. Dr. Godley and False Creek are putting their necks out on the line in an effort to help get CCSVI recognized and validated by Canada. The Doctors that work there are probably nervous about diagnosing something that is not accepted by the medical community. I don't blame them. Thus the ambiguity of the written reports. I have heard the same type of cautious behavior going on at other scanning clinics in Canada too.

I mentioned to False Creek that when they offer the scans to patients they should clearly outline what they are going to get and what they are not going to get. If patients have a clear understanding of the service they are purchasing their expectations will be more realistic and False Creek will have happier customers. I also made sure to tell them how much I appreciated what they were doing for the MS community.I was assured that they were working on these problems. Once the medical community accepts CCSVI and the liberation treatment,I imagine that interventional radiologists will most likely take over the scanning and False Creek will not enjoy the brisk business they are experiencing now. Do I think that Dr. Godley is aware of this? I'm sure he is but it seems he's more interested in helping the patients than making the big bucks. I underestimated his motives and intentions and I apologize.

My advice for people wondering if they should get scanned at False Creek? Absolutely. They are just starting out so there might be some bumps but they care and they will help to work things out and give you the best possible experience. Keep in mind that CCSVI is constantly evolving as is technology so we may end up with more questions when we seek answers. The answers will come. We just need to be patient because this is just the beginning.

Check out the section called "How We Feel"

2010-03-01T09:41:00.000-08:00

An EXCELLENT website from the UK about MS

Fighting the Good Fight or Chasing My Tail?

2010-02-27T16:21:00.000-08:00

Some days I have doubts. I read the blog posting by Dr. Kantor and got shot down by him when I told him that the patients who have had the liberation surgery are still doing exceptionally well post op. Of course this is only anecdotal so the medical community doesn't accept the validity of it. I see posts on Face Book by supposed learned Professors and Doctors that rip apart not only the anecdotal but the scientific parts of the CCSVI trials. The Canadian MS Society and Alberta Health Care are doing everything possible to quash further research and to discredit current studies. It's times like these when I wonder what the hell am I doing?

Well today I read an updated compilation of the testimonials of Dr. Zamboni's Liberati. These are the lucky buggers who got the angioplasty through Dr. Zamboni's study. After I read this my doubts disappeared without a trace.THIS IS WHAT I AM FIGHTING FOR!

These are the testimonies of the Liberation Procedures, Feb, 27 2010 - Updated on February 5th, 2010
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Today at 7:32pm
These are the testimonies of the Liberation Procedures that were directed by Doctor Zamboni and that were written on the CCSVI in Multiple Sclerosis page and in the forums.
This information have been updated on February 5th, 2010.

Bologna Pistols – 3 settembre 2009
http://www.facebook.com/pages/CCSVI-nella-Sclerosi-Multipla/139997017782
First of all, I apologize for not making my real name public for personal reasons. I have been Dr. Salvi’s patient for almost 10 years and this year I have been very fortunate to have the Liberation Procedure. Liberation: the word couldn't’t be more appropriate: the sensation of having a lot of energy, good mood, mental clearance that I feel is real.
Personally, I didn’t have any form of disability before the operation, so I didn’t except to see big differences compared to my previous condition…
Instead, I was pleasantly surprised. I finally understood what it meant to have “fatigue” from MS, a symptom that crawls on you and that I didn’t think I had and, instead, it was taking a lot away from me, not only physically, but in terms of mental, phsycological and social means.
To be specific, I had looser movements, more strengh, no more perennial ring around my head, no more tension around the neck and shoulders, good mood, lots of enthusiasm and especially no fatigue.
These men really found the source of the disease and a way to go against it. I have to thank all the Ferrara and Bologna medical staff. Thanks Professor, Mr. Bre, Doctor Galeotti, Anna, Maria, Erica, Ilaria, Sergio, Alessandro…(and all the friends that commented on the chicken wings that will understand who they are) with my heart.

Gabriele Fuschini, September 16th 2009
Hi everyone, I decided to write this now and to answer slowly because I wanted to take a breath before telling you my story.
I went and looked for the documents all over the house, because I couldn’t remember where I had put them…and this made me reflect on the fact that…I am feeling so well now.
I am telling you in big lines: I started having problems with MS in 1989-90.
The diagnosis was very troubling and it arrived after a hospitalization in 1995. I had 3 relapses a year for the most part. In February of 1998, I started therapy with Avonex interferon, which I stopped in June of 2000 because it had caused me a kidney problem. So I started taking an immunosuppresent, the Aziotiprina. I knew Zambo since 2006 and he asked me if I was willing to be a part of this research.
My Liberation arrived on the 10th of January 2007, I had a stenosis in the subclavial jugular and a problem caused by the azygos vein. I felt the improvements right away…no, it’s not Aza,
just like some people might say…because, after another visit with Dr. Zamboni, after doing the check up echo, I found out that I had multiple cysts in the lobe of the thryoid.
In April of 2008, I went to the neuro because I had problems with the left part of my neck for many days. In neurology, I was told that I had to take the cortisone.
While I was coming out of the hospital, and I didn’t know what Saint to thank, I met Dr. Zamboni that, after learning about the situation, he told me “Wait before starting the cortisone, come to meet me in two days”.
Then, two days later, he does the echo again and and there was a stenosis again, I went to the operating room and I was Liberated again. My story is quite long, but I couldn’t make it shorter.
I haven’t taken any MS drugs since April of 2007. What else can I say?”

Marco Gaietti, September 16th, 2009
http://www.facebook.com/pages/CCSVI-nella-Sclerosi-Multipla/139997017782
“Hi everyone, I have had MS since 1999 (the definite diagnosis, but I had other episodes previously that were interepreted in many ways…). I am a Liberato and I confirm that I had some improvements and that many (doctors and people that work against MS for monetary reasons) said that this is a pioneer and experimental procedure and so it is not trustworthy (what is crazy is that I was told not to follow it, but I had already done it…). If it is true that you appreciate things only after you lose them and while you have them, you take them for granted, then a little improvement (for a healthy person) is not a very big deal, but for me it was an enourmeous difference. Thanks. Mr. Bre`, the Professor and thanks to the wonderful team!”

This was translated directly by the person that has the procedure.
Gici - Wed Oct 14, 2009
http://www.thisisms.com/ftopic-8446-days0-orderasc-0.html
"I am back home following venogram and bilateral balloon dilatation of the jugular veins at 2 pm.
I feel well, my back is less stiff, my movements are quicker and my right leg feels already more powerful.
I am not on any blood thinners.
The procedure was carried out at the Royal Victoria Hospital in Belfast by the radiologist Dr Anton Collins while I was under the care of the vascular surgeon Mr Robin Baker.
All the team were extremely excited and believe in Zamboni's theory.
I sincerely hope that today represented a breakthrough and that many patients will benefit in Northern Ireland. The ice has been broken: I look forward to a bright future for MS sufferers.
Thank you all for the good wishes,
Gici"

Man Go – 20-10-09
http://www.facebook.com/pages/CCSVI-nella-Sclerosi-Multipla/139997017782
“Hi everyone!
I had the procedure done at Sant’Anna’s Hospital in Ferrara in November of 2008, with Dr. Zamboni’s team.
I had two closed jugular veins: the jugular and the azygos. After the Liberation Procedure, I felt well right away. I felt stronger and less tired….From March 11th, 2008, the day of my Liberation procedure, that happened at the center of Vascular diseases where Dr. Zamboni is the director (inside Sant’Anna’s Hospital in Ferrara) thank God! I HAVEN’T HAD ANY MORE RELAPSES! I regularly take Rebif just like it was prescribed to me by my neurologist Fabrizio Salvi. I am always ready to give more explanations if you need them.
Hugs,
Man Go”

framorgana - Sab 12 Set 2009
http://www.ideamultipla.it/forum/viewtopic.php?t=9535
Hi, I had the operation at the end of March 2008 and I haven’t had relapses since then, I didn’t have any complications from the procedure and I had only a little band aid in the groin area.
My life got better right away.
I had the Procedure during a relapse (I couldn’t feel anything from the neck down, I couldn’t see from an eye and I was very weak) two hours after the procedure, everything was gone (and no more cortisone for me).
I am writing to you because this is all true and I am the proof of this! And I really hope that the time that it will take to have other people get the procedure in many centers in Italy will be short (Dr. Salvi and Dr. Zamboni cannot take care of all the 57.000 patients all by themselves!).
I suggest to go to your neurologist and ask him to get informed in a direct way and to help make what these two doctors were able to discover a concrete reality!
I hope I have been able to help!

Giro - Ven Ott 30, 2009
http://www.sclerosi.org/forum/viewtopic.php?t=19112&postdays=0&postorder=asc&start=60
I had talked about the effects of the Liberation on me in many different discussions in this forum. I am going to collect and write again the details because, in a very few days, I will get to my first anniversary. I am one of Dr. Salvi’s patients at Bellaria in Bologna. I was diagnosed in April of 2000.
I was liberated in Ferrara the first days of November 2008 by the “magi” team of the genious Professor Zamboni and by the expert hands of the radiologist Dr. Galeotti.
It was found a CCSVI, insufficient venous cronic celebro spinal of type A, that was characterized by the stenosis of the left internal jugular vein and a stenosis of the Azygos vein.
“Because these conditions don’t allow the proper venous drainage, the patient underwent on the same day a angioplasty (a baloon that enlarges the vein) that eliminated the stenosis and the congenital obstructions bringing things back to normal and lowering the venous pressure after the vascular treatment”.
How long does it take? One or two hours? I have to admit that when I was there, the last thing that I was thinking of was the lengh of the procedure. In practice, the balloon is enlarged to bring back the form of the vein and then it is taken out. It’s a techic that is used a lot in vascular surgery.
Local anesthetic, completely awake, outpatient hospital, when they take the pictures, you have to hold your breath a couple of times, after the operation, you have to stay still with your leg laying down on the hospital bed. A couple of hours more (I don’t recall well).
I felt the change right away, right after the operation (I repeat, it was local anesthesia) from the afternoon to the evening, the time that took me to get up from the little bed to get home.
These are the improvements that were immediate: back pain gone, my extremities don’t fall asleep any more, the deep sleep came back; then I realized that the fatigue is much less, after some exercises and strains, the back pain was coming back but now it doesn’t come back any more! For me this is incredible (I was a stretching expert!) I couldn’t sleep supine because the extremities were falling asleep. Supine, I couldn’t put my hands on the belly because, in less than a minute, they would be asleep. In the morning, I don’t wake up feeling like a truck ran over me. The headaches are gone. I don’t feel the spasms along the back when I move my head forward. Things that were a part of me and that I had learned to live with and then…I find out that there is another life on earth!
The point is that there aren’t only the immediate changes, but the fact that the “Liberation”, allowing the blood from the head and from the spine, letting it go to toward the heart, makes it so the blood doesn’t become stagnant, because it is the stagnancy that causes the iron settlements which bring the inflamation and the relapses!
I am still taking Rebif but Dr. Salvi told me that, very soon, I willl be able to stop it.
Thank you, Doctor Salvi and thank you Professor Zamboni.”

Noam Hirsch - November 29, 2009
http://www.facebook.com/pages/CCSVI-nella-Sclerosi-Multipla/139997017782
Testimony letter that I sent to the authorities and that was made public on the CCSVI Multiple Sclerosis site.
My name is Noam Hirsch, I received an endovascular treatment done by Prof. Zamboni after which I felt reborn: the clinical proof that Dr. Salvi has, and my experience and perception, have demonstrated scientifically. Then I had a restenosis (that I was told it was going to be possible) and, contacting Sant’Anna’s hospital, I was told that now they can’t operate. And now I am feeling badly again: does the cause effect say anything to you?
The world watches with appreciation and we, again, are giving the worse of what we can give: disorganization, neglect and incapability of reacting in real time.
I can tell you that I have trouble understanding; Zamboni discovered another disease, CCSVI, he cured it for me, I had improved the quality of my life that I didn’t hope for because of the other disease, multiple sclerosis.
It is even evident to a stupid person that the time factor is ESSENTIAL. The disease starts to progress until we get unblocked. Why can’t he do it again? Even if I would see him do it almost in hiding, it seems to me that there is nothing that is not certified (International recognized CCSVI, 4TH Meeting of the Union Internationale de Phlebologie in Montecarlo taken by www.fondazionehilarescere.org).
Because I am a civil person, I communicate to you in advance that I am looking into finding a lawyer that is expert in medical issues to sue the Director of Medicine in the town of Ferrara, the General Director and the Director of the Sant’ Anna’s Hospital and all the members of the ethics committee for moral and emotional damages.
I am going to ask a million Euro to give to research.
Let’s see who is going to be faster; building a cause or you taking off the absurd block on the bottle. I was reassured by Zamboni’s secretary ( who tried to keep me calm) that the service will be authorised again in 2010, but this long suspension has created a very long list that, without the structural adjustments, will not be fixed in a short time. I hope that all of this is clear: that the problems have alread been solved and that I won’t have to attack you to get what is right in the right amount of time, but I am going to assure you that I don’t want to waste my time. If you would get informed about the benefits of the treatment for CCSVI, you would understand me: the time factor is ESSENTIAL.
Hoping that we are going to avoid a bad face in front of the entire world,
With regards.
Noam Hirsch

monicaxxxx - Mar 01 Dic 2009
http://www.ideamultipla.it/forum/viewtopic.php?t=9535&postdays=0&postorder=asc&start=220
I have been in the care of Doctor Salvi for 15 months and I had the angioplasty with great results from right after the surgery and my life has improved a lot. I don’t get tired as much like before and all the problems that I had before are lighter…I hope that, seeing the results, in a short amount of time, many other neurologists will move and will organize with the same weapons and that the country will help abbreviate the journey without putting ‘sticks’ in the wheels…because I believe too that this is the discovery of the century.

Renzo Guidetti - 03 Dic 2009
http://www.facebook.com/pages/CCSVI-nella-Sclerosi-Multipla/139997017782
“I was Liberated in May. Both Jugulars. My diagnosis happened in 1994 and since then I had tried so many therapies that didn’t help me avoid the progression of the disease. Obviously, I had to take Cortisone, Immoglubines, 3 years of Kousmine, 4 years of Interferons, 1 year of Antibiotics and 1 year of immunosuppressants.
On the 20th of May, my jugular veins were “Liberated”. In the following days, I did all the test and the usual exams but I was already feeling better:
-My hands and feet held in extended position could last longer
-I was speaking more clearly
-I had more strengh
Two days after the operation, the little positive signs became so numerous that I didn’t want to go to bed. At the end, I gave up but I couldn’t fall asleep because I was too euphoric. Everything was wonderful, but I had to wait for the morning to start being a part of the world and observe all the little, but numerous positive indications.
For the first time, I was sure to have finally taken the right road. After a few more days, it was evident that the procedure didn’t give us the results that we had hoped for and, at the following visit, Erica saw that the jugular veins had closed again. Since April, I have been waiting for another procedure and I hope that Dr. Zamboni has been figuring out a way to avoid the restenosis. For me and for so many others that have the word hope blocked in our mouths.

This is my friend Paolo, who I write to very often. He is doing very well! :)
Paolo Maria Ragazzi 13-Gennaio-2010
http://www.facebook.com/pages/CCSVI-nella-Sclerosi-Multipla/139997017782
If I am sleeping, please don’t wake me up because what I am going to tell you right now, then, is a dream!!!!
My name in Paolo Maria Ragazzi, I am 52 years old, I have a family, and I had a descrete sport background (in rowing and in fencing)
and I had a strong desire to live. In 1987 I was diagnosed with Secondary Progressive.
My world fell on top of me. I started progressing and I progressed to losing the use of my left leg, then my left arm and then my right leg, problems breathing and having extreme and chronic fatigue.
Incapability of moving and keeping a straight position without having to hold on to things. My left hand is almost always numb. They tried the botox treatment but with very little results.
I became aware of this project at the end of 2006 and, after the routine check ups, in June of 2007 I decided to have the procedure. A couple of hours after it, my breathing rythym got better and became regular and I didn’t have the heavyness of breathing, even when I was speaking and I wasn’t tired any more and I felt stronger. I was able to go to the bathroom and do normal things like dressing myself having to hold on to stable things a little less. I was able to stay in a still position for some time, around ten minutes at times, without holding on to anything and I was able to stay in a “contorted” position for a couple of minutes.
I started getting stronger, then came the capability of going to the bathroom to do the normal functions and get dressed without the need to hold on to stable things, then I was able to stay in a straight position with stable point for periods of sometimes 10 minutes and without stable points, in a “contorted” position, for a couple of minutes.
The satisfacion of being able to go out in the evening because I wasn’t tired the way I used to be, I didn’t have to rest as much in the afternoon and I was able to go back to the yoga lessons that I had stopped going to, I had the desire and the enthusiasm of reaching other goals because I had already overcome so many obstacles…
Now, I am doing some rehab to get more improvements, even if things are already quite satisfactory. No, I am not sleeping and this is not a dream!!!!! Ah, I apologize for the mistakes but I am writing with my ten fingers!!!! Thank you, Paolo Maria Ragazzi

2007 From Dream to Reality:
When the reality is better than the dream, well, then it’s better to be awake and be aware that what you are doing is wonderful! My name in Paolo Maria Ragazzi and I have come from being in the hospital at Don Gnocchi in Milano where, for 3 weeks, I had to undergo some diagnostic tests and some rehabilitation therapies.
The doctors found an improvement in the breathing process compared to 2006. And the test called MOC also showed an improvement. The therapists that were helping me in 2006 and during the previous years found less problems breathing and they saw that I didn’t have as much trouble speaking. I responded positivitly after the therapy sessions. Everything that happened confermed the impressions of the doctors and of the medical assistants. Talking about my relashionship with others: I was always cheerful, ready to play (chess and cards) and with others
Well…isn’t better to be awake?
Thank you and have a good day.

Two and a half years have gone by after the first intervention and in the meantime I continued to be checked and I continued the therapies suggestd by the doctors at the Don Gnocchi, and I have been able to keep stable physically and pysicologicly. A few months ago, I started having problems of mild incontinence . Professor Zamboni did another Doppler test and has once again raised the problem of stenosis formation. Yesterday I had the procedure again, in absolute absence of pain, and today I found an improvement of my incontinence...I hope this continues! This is my experience and I hope will give the strength to continue fighting to those who are already convinced, and I hope that I can alleviate the concerns to the people that have them and to give doubts to those that are totally
skeptical! A hug and thanks to all the people that are a part of the team of Professor.
PAOLO MARIA RAGAZZI....

MY ADDITION-EXPLANATION to the Density test:
The Computerized bone mineral density is a modern medical diagnostic technique of investigation, whose purpose is to investigate the state of bone mineralization. This is a test done to measure the density of bone mass, revealing degeneration of the structure.

Noam Hirsch - 20 Gennaio 2010
http://www.facebook.com/pages/CCSVI-nella-Sclerosi-Multipla/139997017782
“With hope for the future for all of us, I can tell you that I was Liberated again from the stenosis that happened again and that brought down my quality of life. As soon as the ethics committee allowed them to operate again and to take care of the people that were already treated (while it’s still the same for people that never had the procedure and that cannot be accepted as new patients) Dr. Salvi and Dr. Zamboni did the procedure again and I am back to feeling good, within the limits of what the disease gave me throughout the years. But the beast has been stopped again and this mechanism of cause and effect that is so evident should convince all the people that are members of the committee that don’t permit NEW procedures, and this can answer to the pseudo-scientists that, not only close their eyes and don’t study, but they also don’t read the publications. They ignore the existenc of this procedure. Then, they realize that there is proof and so they see the ‘lines and the polkadots’ or maybe they are needed to keep the cash flow to sustain their banks, but empty the accounts of the country, while we feel worst?
Who is going to defend us? The AISM? (Italian MS Society) But if they have read, studied, and understood and on their site, they mention arteries instead of mentioning the CCSVI of veins?? Congratulations!
We have to conquer everything by ourselves.
So let’s go to VICENZA!

Paolo Raccomini- February first, 2010-02-27
http://www.facebook.com/pages/CCSVI-nella-Sclerosi-Multipla/139997017782
These are my free thoughts. First of all, I am not a cardiologist, I am not a neurologist, I am not a doctor, I am not a techinician, I was a patient, maybe, I am still a patient…I don’t know, I don’t think about it any more because now I don’t have to think about it! The only thing that I can tell you is my actual state of health. I am one of the few that were Liberated. I can tell you how you can feel after you were Liberated. I don’t have to think and ask myself any more: “And if then I won’t be able to make it? Or if I will feel worse tomorrow? …if I will remain alone?…. help!!!!
Now, I can do it!”
More free thoughts- second part:
“Think that all the negative thoughts will only be a memory...and that you will live a new life, free of the obsession of not being up to the challenge. I don’t believe that this is all, I believe that it’s not only a Liberation of the body, but it’s of the mind too. Just like many people can think, what is bad in this?

Rita Tassinari - February 5, 2010
http://www.facebook.com/pages/CCSVI-nella-Sclerosi-Multipla/139997017782
"My name is Rita, I live in FERRARA and I am a Liberata too.
I have MS since 91 and I have been on the wheelchair for 9 years but, thanks to the operation, I got back many different little things and this happened right away.
It does feel like a real Liberation…I didn’t have the typical stiffness, without pains, my vision got clearer and all the pains of the last 4 or 5 years are gone. And now that 18 months have passed, I didn’t progress, everything stopped and I don’t have any type of pain. On Wednesday I went to see Dr. Salvi and he was very enthusiastic. It is the first time in so many years of disease that something like this is happening and this is happening without ruining my liver and my other organs with heavy drugs. I wish that we could “liberate” the beaurocracy very soon.
Ciao,
Rita

Ciao Elvezia and Ciao Alessandro, I hope that I will explain myself well. Having to make a testimony makes me nervous.
I was one of the first Liberata (January 15th, 2007) and I had to redo the Liberazione because one of the jugular veins didn’t want to stay open. But I can tell you this: in the months after the liberation I was feeling really well, then I wasn’t feeling too good and I went back to Ferrara and thanks to the echo doppler, we understood the reason why I wasn’t feeling well, so the correlation is clear.
And this has been a big relief: because it is a stupid vein that we are talking about, not of the secondary progressive MS, this awful disease that even just pronouncing the name makes you anxious. We are talking about a stupid vein that is outside the cranium and that can be enlarged and, in the future, it can be stented and even changed. At the first visit, I remember that the Professor told me: for as long as your veins will stay open, you will be ok.
I am a complicated case and I am quite “particular” but, as you can see, I am here with you because I know how I feel when my veins are not open. I need one of the jugulars to stay open: I got the other two so I will never give up!!!!

Interventional Radiologists

2010-02-22T18:03:00.000-08:00

Today I went to get an RX renewal for my LDN (low dose naltrexone). I have to get it through a physician who works at an alternative medicine clinic here in Calgary as my GP and neuro had never heard of it. lol Anyways when I walked into his office the first thing he said was "You're going to ask me about CCSVI aren't you?" I laughed and said I probably knew more about it than him. I was intrigued that he brought it up and asked him what he thought about it. He said he had been doing a bit of private research on the subject and it sounded extremely promising. He said that it will be hard for the medical world to accept that the liberation surgery is "the cure" for MS. I had to stop him at that point because he said the "C" word. I said "well it's not really a cure, it's a treatment". He said it WAS A CURE! He said anything that stops the progression and attacks of a disease IS A CURE. I was blown away! I had NEVER heard an MD say that it was cure before. WOW! I still don't want to get my hopes up and start calling it a cure yet. It was hard for me to accept the concept of CCSVI in the beginning, let alone start calling it the cure for MS. YIKES!

I told him I was going to Poland to have the surgery and he was really happy for me. He asked me if I could give him Dr. Simka's contact information and False Creeks info as well. He gave me his e mail. I don't even have my GP's e mail or my neuro's e mail! I asked him what his advice was on getting CCSVI accepted in the medical community and getting people treated in Canada. He said we need to contact INTERVENTIONAL RADIOLOGISTS.

These are the folks who do minimally invasive procedures like angioplasties using imaging technology for guidance. HELLO! Don't they sound like EXACTLY what we need? So I am writing to all the IR's in Canada and sending them information on CCSVI and the liberation surgery and urging them to research it as many countries around the world are performing the angioplasties for MS patients but Canada is not.

I gave up on the neurologists a few weeks back and started hounding the vascular surgeons recently but now Im adding IR's to my list. If you seem to be getting nowhere with your current medical caregivers try contacting an interventional radiologist.

I Dare to Dream of a Life without Disability

2010-02-19T10:16:00.000-08:00

For 10 years since being diagnosed with MS I have lived my life like a prisoner on death row. I could see the end of the line and it wasn't good. In the beginning I created goals to achieve to help keep myself motivated and to stave off depression. I did rehabilitate my legs and backpack the West Coast Trail after my initial diagnosis. That was all well and good back then but years have passed and there has been no hope or promise of anything good on my MS horizon. I believed my neurologist when he told me that copaxone would help my RRMS so I kept taking it year after year even though I have an extreme phobia of needles.

The last 2 years of my life became a living nightmare when my health started to slide downhill, slowly but surely on a daily basis. My legs were getting weaker every day and I was falling down a lot. MY complaints to my neuro did nothing for me. My family and friends got tired of hearing me whine about it on a regular basis too. I knew copaxone was not working and I was so frightened that I was slipping into secondary progressive MS. What would I do? I was familiar enough with the available drugs at that time to know that there was not another drug treatment that I would want to risk trying so I was screwed!

I began searching the internet for answers and help but all I came up with in the beginning was either more ineffective and dangerous drug therapies or snake oil cures from quacks. I slipped into a deep depression. I started contemplating what my life was going to be like without the use of my legs. I knew it wouldn't stop there either. I imagined what living hell would be for me as my disabilities grew and I was scared shitless. I admit I thought about suicide when I was having a really bad day.

I finally came across information about low dose naltrexone (LDN). I was skeptical until I read a book called "Up a Creek With a Paddle" by Mary Boyle Bradley. It's her family's personal journey with Primary progressive MS. I started taking LDN in June 2009. Within a couple months I felt the progression stop. I knew, however, that this may not last forever and I was still depressed and desperate. I started thinking about how I was going to end my life before I became a burden to my family. I even found a place in Switzerland called "Dignitas". It's a place you go to check in and then "check out". (Euthanasia) That avenue gave me some peace of mind but I was extremely bitter that I was dealt these shitty MS cards and that I had to consider killing myself to retain some dignity. In August I was so depressed I went to my Doctor and asked to be put on anti depressants. Thankfully he started me on some and they helped me within days. (Prestique) Did I feel like a loser? Absolutely! I needed drugs to help me cope. That was a brutal reality check for sure. They did help me though, and I'm still taking them now. (I am still an advocate of Dignitas, however, and would not hesitate to go there if I ended up completely disabled.)

In November 2009 I was watching TV with my husband one night and I got a phone call from a friend named Joan L. She told me there was a show on right then on CTV/W5 about MS and a new treatment. I thanked her and hung up. I was so skeptical and jaded but I told my husband and he went on line and taped it for me. Later we watched it together and I immediately didn't believe it but I was intrigued. It wasn't some rat study or more drugs and it showed people getting better right after the surgery. I couldn't afford hope at this point. I was way to fragile for that at this point in my life so I asked my husband to go on line and do some research for me. He joined a couple chat groups and CCSVI in Multiple Sclerosis on Face Book by Joan Beale. Joan's husband Jeff was the patient featured in the W5 story and Joan was the lady responsible for bringing Zamboni's research to Stanford and CTV.

The more I learned through my husband the more certain I became that there was something to CCSVI. After a few days I became confident enough to join some chat groups on my own. I was blown away! Many people had already had the surgery in Poland and at Stanford and were doing amazingly better! I still wasn't 100% convinced and wanted to research more. In the meantime I asked people where I could go to get the liberation surgery and was told Poland. I searched for Dr. Simka's e mail on the web and sent him a letter. He wrote back with all the info and I got myself on the waiting list. Even though I was not convinced about all this yet, I figured I should get on the list and if I decided later, that it wasn't for me, I would cancel. I'm glad I got on the list when I did as just a few months later Dr. Simka had stopped taking patients as his list was over 2,300 people long with a 2 year waiting period.

I have spent on average about 7 hours a day on my PC researching CCSVI and networking with other interested people. I have sent letters to the media, politicians, TV, radio, friends, family, MS society, MS clinic etc. An underground network of CCSVI information and support had grown, seeminly overnight, with a fierce momentum.

Once I finally was convinced of the viability of CCSVI and the Liberation surgery my life had meaning again. I was happy and could look to the future with HOPE. For 10 years I lived in HELL with no hope. Each morning when I wake up now, my first thought is "CCSVI!" I am so elated and thankful for Dr. Zamboni and his research that words cannot accurately describe my feelings. He is giving me my life back. I am not on death row anymore-I've been liberated!

A MUST READ paper by Dr. Ashton Embry

2010-02-18T13:57:00.000-08:00

Dr. Ashton Embry's Paper on CCSVI and Treatment

A link to a list of patients who have had the liberation surgery

A link to MSDirect-An Excellent Source of MS Information By Dr. Embry and his Wife

CCSVI Information Booklet by Mona Alahverdi (minus the pictures)

2010-02-12T09:55:00.000-08:00

Liberation Procedure
( CCSVI )
Mona Alahverdi
monaalahverdi@hotmail.com

"MS as Vascular Disease"

1. What is CCSVI?
Chronic cerebrospinal venous insufficiency... it’s a chronic (ongoing) problem where blood from the brain and spine has trouble getting back to the heart. It’s caused by stenosis (a narrowing) in the veins that drain the spine and brain. Blood takes longer to get back to the heart, and it can reflux back into the brain and spine or cause edema and leakage of red blood cells and fluids into the delicate tissue of the brain and spine. Blood that stays in the brain too long creates “slowed perfusion”...a delay in deoxygenated blood leaving the head. This can cause a lack of oxygen (hypoxia) in the brain. Plasma and iron from blood deposited in the brain tissue are also very damaging.
2. How is it related to MS?
The majority of MS patients tested so far has it? Over 500 MS patients in Italy have it. They were tested by Dr. Paolo Zamboni. Sixty five MS patients in the US have it. They were tested by Dr. Michael Dake. Twenty MS patients have it in Poland. They were tested by Dr. Mariam Simka. Two patients in Paris have it, they were tested by Dr. Claude Franceschi. 1700 patients and controls are being tested for it by Jacobs Neurological Institute at SUNY Buffalo.
None of the normal patients (controls) tested has it. None of the patients with other neurological diseases have it. Only people with MS.
3. So? Maybe the MS lesions cause this. Chicken and egg and all that....right? Couldn’t the lesions do something to the veins?
Probably not. We already have a couple of medical models for the process of Chronic Venous Insufficiency in the brain and spine....because it happens in other places in the body, and we’ve known about it for years.
a. Chronic Venous Insufficiency in the legs. This is a process which begins with reflux and blockage in the veins of the legs. The deoxyginated blood can’t get back to the heart, and it causes edema (swelling) and leakage of red blood cells and fluid into the tissue of the leg. This creates petechiae (little blood spots), iron deposition into tissue, or venous ulcers (really gross lesions on the legs). It makes collateral veins (called spider veins) that try to take the blood back, but can't. Dr. Zamboni wrote a paper called "The Big Idea"-where he likens CCSVI to chronic venous disease of the legs.
b. Congestive Venous Myelopathy. This is a process where blockages in the veins along the spine cause the veins to leak damaging red blood cells and fluid into the tissue surrounding the spinal column. The result is demyelinating lesions on the spine. Paralysis, balance and bladder problems result.
4. Well…that’s all fine, but I’m on an immune modulating medication, and that will take care of this problem, right?
CCSVI has been found in MS patients, whether or not they are on immune modulating medication. A woman who underwent complete immune ablation with Revimmune still had CCSVI with 2 blocked jugulars. Dr. Zamboni tested over 500 MS patients, many who were on immune modulating medication, and they all still had CCSVI.
5. How can I find out if I have this?
There are a few different protocols, depending on where you live and what is available. In Italy, Dr. Zamboni begins with a Doppler ultrasound of the neck and brain, to see if the blood is refluxing. Then he performs a venography. This is where dye is injected into your veins to see the blood flow and possible stenosis. Jacobs Neurological Institute is following this protocol and also using MRV (magnetic resonance venography) Dr. Dake at Stanford was using MRV followed by endovascular venography to diagnose stenosis. Dr. Mark Haacke is using a combination of SWI-MRI technology and MRV, but he also recommends Doppler testing to confirm reflux. In Poland, Dr. Simka is using Doppler technology followed by venography. As you can see, right now the diagnostic protocol is dependent on your location.
6. My neurologist read the research and said it’s impossible, that I can’t have this. Besides, it's unproven.
That’s your neurologist’s opinion. Ask s/he what they believe causes the MS demyelination process. And ask for the facts, not speculation.
7. My neurologist says that MS is autoimmune, and he can prove it! I have oligoclonal bands in my spinal fluid, and that shows my immune system is going after my myelin.
Remind your neurologist that oligoclonal bands in spinal fluid also appear in people with neurovascular disease- like stroke and dementia. It's a well known fact that the immune system is activated to clean up after axonal death and tissue damage in the brain. CCSVI causes damage to the brain and axonal death, and the immune system becomes involved. But this doesn't prove that the immune system causes CCSVI or MS. Autoimmunity in MS is still a theory.
8. Yikes! If I have CCSVI, what can be done about it?
The good news is that Dr. Zamboni has been testing a procedure (the Liberation procedure) in his Italian patients for three years. He goes into the femoral vein endovascular (thru a small incision at the groin) and goes up into the blocked vein and opens it with a small balloon. He's done this to hundreds of patients, and many have greatly reduced symptoms and healing. He's also done this procedure on 18 MS patients who were in the hospital in the midst of bad relapses. The relapse symptoms stopped and were reversed in 4 hours to 4 days from having the balloon procedure...without steroids! Dr. Michael Dake at Stanford University was using stents (metal tubes) to keep the veins open if the ballooning did not keep the veins open. Treated patients have had reduction in fatigue, heat intolerance, spasms and some have had improved vision and mobility. Dr. Mariam Simka is overseeing these stenting and ballooning procedures in Poland. Stay tuned! We'll have more to report in the months ahead.
__________________________________________________________
MRI

Iron In the midbrain

Basal Ganglia, Thalamus & Thalamostriate System

Iron in the Globus Pallidus

Stenosis Images Courtesy before & after treatment

Pinched Jugular

SWI: Iron deposition in thalamostriate veins

MS Breakthrough
Elena Ravalli was a seemingly healthy 37-year-old when she began to experience strange attacks of vertigo, numbness, temporary vision loss and crushing fatigue. They were classic signs of multiple sclerosis, a potentially debilitating neurological disease.
It was 1995 and her husband, Paolo Zamboni, a professor of medicine at the University of Ferrara in Italy, set out to help. He was determined to solve the mystery of MS – an illness that strikes people in the prime of their lives but whose causes are unknown and whose effective treatments are few.
What he learned in his medical detective work, scouring dusty old books and using ultra-modern imaging techniques could well turn what we know about MS on its head: Dr. Zamboni's research suggests that MS is not, as widely believed, an autoimmune condition, but a vascular disease.
More radical still, the experimental surgery he performed on his wife offers hope that MS, which afflicts 2.5 million people worldwide, can be cured and even largely prevented.
“I am confident that this could be a revolution for the research and diagnosis of multiple sclerosis,” Dr. Zamboni said in an interview.
Not everyone is so bullish: Skeptics warn the evidence is too scant and speculative to start rewriting medical textbooks. Even those intrigued by the theory caution that MS sufferers should not rush off to get the surgery – nicknamed the “liberation procedure” – until more research is done.
U.S. and Canadian researchers are trying to test Dr. Zamboni's premise.
For the Italian professor, however, the quest was both personal and professional and the results were stunning.
Fighting for his wife's health, Dr. Zamboni looked for answers in the medical literature. He found repeated references, dating back a century, to excess iron as a possible cause of MS. The heavy metal can cause inflammation and cell death, hallmarks of the disease. The vascular surgeon was intrigued – coincidentally, he had been researching how iron buildup damages blood vessels in the legs, and wondered if there could be a similar problem in the blood vessels of the brain.
Using ultrasound to examine the vessels leading in and out of the brain, Dr. Zamboni made a startling find: In more than 90 per cent of people with multiple sclerosis, including his spouse, the veins draining blood from the brain were malformed or blocked. In people without MS, they were not.
He hypothesized that iron was damaging the blood vessels and allowing the heavy metal, along with other unwelcome cells, to cross the crucial brain-blood barrier. (The barrier keeps blood and cerebrospinal fluid separate. In MS, immune cells cross the blood-brain barrier, where they destroy myelin, a crucial sheathing on nerves.)
More striking still was that, when Dr. Zamboni performed a simple operation to unclog veins and get blood flowing normally again, many of the symptoms of MS disappeared. The procedure is similar to angioplasty, in which a catheter is threaded into the groin and up into the arteries, where a balloon is inflated to clear the blockages. His wife, who had the surgery three years ago, has not had an attack since.
The researcher's theory is simple: that the underlying cause of MS is a condition he has dubbed “chronic cerebrospinal venous insufficiency.” If you tackle CCSVI by repairing the drainage problems from the brain, you can successfully treat, or better still prevent, the disease.
“If this is proven correct, it will be a very, very big discovery because we'll completely change the way we think about MS, and how we'll treat it,” said Bianca Weinstock-Guttman, an associate professor of neurology at the State University of New York at Buffalo.
The initial studies done in Italy were small but the outcomes were dramatic. In a group of 65 patients with relapsing-remitting MS (the most common form) who underwent surgery, the number of active lesions in the brain fell sharply, to 12 per cent from 50 per cent; in the two years after surgery, 73 per cent of patients had no symptoms.
“I am confident that this could be a revolution for the research and diagnosis of multiple sclerosis” Dr. Paolo Zamboni

Augusto Zeppi, a 40-year-old resident of the northern Italian city of Ferrara, was one of those patients. Diagnosed with MS nine years ago, he suffered severe attacks every four months that lasted weeks at a time – leaving him unable to use his arms and legs and with debilitating fatigue. “Everything I was dreaming for my future adult life, it was game over,” he said.
Scans showed that his two jugular veins were blocked, 60 and 80 per cent respectively. In 2007, he was one of the first to undergo the experimental surgery to unblock the veins. He had a second operation a year later, when one of his jugular veins was blocked anew.
After the procedures, Mr. Zeppi said he was reborn. “I don't remember what it's like to have MS,” he said. “It gave me a second life.”
Buffalo researchers are now recruiting 1,700 adults and children from the United States and Canada. They plan to test MS sufferers and non-sufferers alike and, using ultrasound and magnetic resonance imaging, do detailed analyses of blood flow in and out of the brain and examine iron deposits.
Another researcher, Mark Haacke, an adjunct professor at McMaster University in Hamilton, is urging patients to send him MRI scans of their heads and necks so he can probe the Zamboni theory further. Dr. Haacke is a world-renowned expert in imaging who has developed a method of measuring iron buildup in the brain.
“Patients need to speak up and say they want something like this investigated … to see if there's credence to the theory,” he said.
MS societies in Canada and the United States, however, have reacted far more cautiously to Dr. Zamboni's conclusion. “Many questions remain about how and when this phenomenon might play a role in nervous system damage seen in MS, and at the present time there is insufficient evidence to suggest that this phenomenon is the cause of MS,” said the Multiple Sclerosis Society of Canada.
The U.S. society goes further, discouraging patients from getting tested or seeking surgical treatment. Rather, it continues to promote drug treatments used to alleviate symptoms, which include corticosteroids, chemotherapy agents and pain medication.
Many people with multiple sclerosis, though, are impatient for results. Chatter about CCSVI is frequent in online MS support groups, and patients are scrambling to be part of the research, particularly when they hear the testimonials.
Kevin Lipp, a 49-year-old resident of Buffalo, was diagnosed with MS a decade ago and has suffered increasingly severe attacks, especially in the heat. (Heat sensitivity is a common symptom of MS.) His symptoms were so bad that he was unable to work and closed his ice-cream shop.
Mr. Lipp was tested and doctors discovered blockages in both his jugular and azygos veins. In January of this year, he traveled to Italy for surgery, which cleared five blockages, and he began to feel better almost immediately.
“I felt good. I felt totally normal. I felt like I did years ago,” he said. He has not had an attack since.
As part of the research project, Mr. Lipp's siblings have also been tested. His two sisters, both of whom have MS, have significant blockages and iron deposits, while his brother, who does not have MS, has neither iron buildup nor blocked arteries.
While it has long been known that there is a genetic component to multiple sclerosis, the new theory is that it is CCSVI that is hereditary – that people are born with malformed valves and strictures in the large veins of the neck and brain. These problems lead to poor blood drainage and even reversal of blood flow direction that can cause inflammation, iron buildup and the brain lesions characteristic of multiple sclerosis.
It is well-established that the symptoms of MS are caused by a breakdown of myelin, a fatty substance that coats nerve cells and plays a crucial role in transmitting messages to the central nervous system. When those messages are blurred, nerves malfunction, causing all manner of woes, including blurred eyesight, loss of sensation in the limbs and even paralysis.
However, it is unclear what triggers the breakdown of myelin. There are various theories, including exposure to a virus in childhood, vitamin D deficiency, hormones – and now, buildup of iron in the brain because of poor blood flow.
While he is convinced of the significance of his discovery, Dr. Zamboni recognizes that medicine is slow to accept new theories and even slower to act on them. Regardless, he can take satisfaction in knowing that the woman, who inspired the quest, and perhaps a dramatic breakthrough, has benefited tremendously.
Dr. Zamboni's wife, Elena, has undergone a battery of scans and neurological tests and her multiple sclerosis is, for all intents and purposes, gone.
“This is probably the best prize of the research,” he said.
André Picard is the public health reporter at The Globe and Mail. Avis Favaro is the medical correspondent at CTV News.
With reports from Elizabeth St. Philip, CTV News

W5 DOCUMENTARY
Watch W5's documentary on the groundbreaking new treatment for multiple sclerosis, which includes the first time the “liberation” surgery was filmed.
It is available on the Web at www.W5.ctv.ca

MS IN CANADA
An estimated 55,000-75,000 Canadians have multiple sclerosis, and every day three more people in Canada are diagnosed with the disease. Canada has one of the highest rates of MS in the world. MS is the most common neurological disease affecting young adults in Canada.
• Women are more than three times as likely as men to develop MS.
• MS can cause loss of balance, heat sensitivity, impaired speech, extreme fatigue, double vision and paralysis. The disease is characterized by lesions on the brain, a result of the breakdown of myelin, the protective covering wrapped around the nerves of the central nervous system.
• The most common treatment for MS is corticosteroids. Steroids reduce inflammation at the site of new demyelization, lessening symptoms.
• MS was first identified and described by French neurologist Jean-Martin Charcot in 1868.
• MS is widely believed to be an autoimmune disorder, but the cause or causes are unknown. There are a number of theories about what might trigger the disease, including exposure to a virus in childhood; exposure to tobacco smoke; lack of the female sex hormone prolactin, which plays a role in the development of myelin; and vitamin D deficiency. Vitamin D may play a role in MS because it helps to construct the interior layer of blood vessels.
• Despite the long-held assumption that MS is an autoimmune disorder, new research suggests it is actually a vascular disease triggered by a buildup of iron in the brain due to problems in blood flow.
Source: MS Society of Canada
Interview with Canadian Doctor (Dr. Haacke)
Here is a radio interview with Dr. Haacke regarding trials and research.
Website Link:
http://www.cfra.com/chum_audio/Mark_Haacke_Jan05.mp3

Doctor's Contact Information
Dr. Paolo Zamboni

Info:

Name: Dr. Paolo Zamboni
Tlf: +39 532 236542
Fax: +39 532 237443
Email (1): paolo.zamboni@unife.it
Email (2): zmp@unife.it

Address: CENTRO INTERDIPARTIMENTALE DI RICERCA E SERVIZI
MALATTIE VASCOLARI - VASCULAR DISEASES CENTER

Cod. 300481 – B
C/o Dipartimento di scienze chirurgiche, anestesiologiche e radiologiche Via Giovecca N. 203
Website: www.fondazionehilarescere.org
____________________________________

Dr.Marian Simka

Info:

Name: Dr.Marian Simka
Tlf: +32 2120113
+32 2120498
Email (1): mariansimka@poczta.onet.pl
Email (2): liposuction@op.pl
Address: Marian Simka, M.D.
Ul. Wodzislawska 78
Pszczyna, Poland 43-200
Poland

Website: http://strona.simka.nazwa.pl/multiple-sclerosis.html

Dr. Jacek Kostecki
Info:

Name: Dr. Jacek Kostecki
Tlf: +48 501 444 784
Email: kosteckj@op.pl
Address: Tychy-Poland
______________________________________________

Dr. Anton Collins

Info:

Name: Dr. Anton Collins
Tlf: +44-2890632425
Address: Royal Victoria Hospital, Belfast
______________________________________________
Dr. Robin Baker
Info:
Name: Dr. Robin Baker
Tlf: +44- 2890633355
Address: Royal Victoria Hospital, Belfast
______________________________________________

Here is a link, where we can see more details about different doctors around the world.

Website: http://healingpowernow.com

A Great site for MS news and Information

2010-02-07T10:38:00.000-08:00

MS Views and Related News

My You Tube Video"Ginger MacQueen responds to the negativity focussed on CCSVI

2010-01-30T19:31:00.000-08:00

My Opinion of the NEW Pills for MS Sufferers

2010-01-23T09:34:00.000-08:00

Wow! I just read about the new pill that the MS Society of Canada is boasting about. I'm shocked and outraged that they are still entertaining the ridiculous notion that we need to suppress our immune systems in order to alleviate the symptoms and attacks. How long does the bullshit charade have to go on? I started reading the article on the MSSC website and fell out of my chair when I read that you increase the risk of contracting herpes and cancer if you take this pill.

Does this sound like a good deal? This is utter BULLSHIT!!! This is what the neurologists have been offering us for the last umpteen years to no avail!! Are there any neurologist out there actually working for a cure?? I doubt it. They are so far up the ass of the pharmaceutical companies it's CRAZY!!!!!

I am a proponent, obviously, of the CCSVI theory and the liberation surgery. Before this I had nothing. No hope. Nothing. I never believed MS was an autoimmune disease and by default, chose to go on Copaxone, as it was the only drug at the time of my diagnosis that wasn't an immune system suppressant. The last 2 years of my life have been brutal as my MS has spiraling out of control despite injecting myself daily with Copaxone for the last 5 years. I knew that soon I would be too sick to live a quality life and I was making plans to go out with some dignity still intact.

It's so funny when I go see my neuro at the MS Clinic once a year to track my progress on the Copaxone. (I have been in a drug study) I get the usual MS tests for balance, vision, dexterity, strength, etc. The last 2 years I have reported to him that I'm getting worse but he always just smiles and nods and says "So you're about the same". Then he writes it down in my chart. I sit there mute and numb in disbelief. I take my new RX for the next years worth of Copaxone and walk out the door. I figured out why he behaves this way, though. I'm in a drug study for Copaxone. He obviously wants positive feedback so he ignores it when I tell him I'm getting worse.

Recently, I heard that there was going to be new MS drugs on the market soon and was looking forward to it. I had hoped that if the CCSVI theory turned out to be bunk, at least I had some new med options.
What a laugh!! Is this is all they can come up with for us after ALL THESE YEARS and MILLIONS of DOLLARS? In any other job on the planet if you worked for years at it and spent millions of dollars and failed you would be fired!! Not so with our neuros!

I am not going to sit here mutely any longer. I am going to send my neuro a copy of the lastest MRI/MRV I had and ask him to take a look at all the numerous, large lesions on my brain now. One of the benefits of Copaxone is suppose to be that it inhibits further lesions. HAH! When I was first diagnosed I had 2 TINY, PIN POINT lesions. THIS IS INSANE!!!! I am not going to let my neuro get away with this any longer. Pumping myself with Copaxone or some poisonous cancer type drug is no longer an option for me. Peace out!

Comments On My MRV Scans

2010-01-21T07:49:00.000-08:00

After my MRV I was told my results would be mailed to me and my GP and he and I would go over them. I had the scan on Dec. 22 and just received the CD of the scan images yesterday on Jan. 20. The written report arrived a few days after my scans. I would really like to sit down with a radiologist and go over the images as I have no idea what I'm looking at and I'm sure my GP wont know much either. I know from the written report I received from False Creek that I was told that I had numerous lesions or plaques in various places on my brain. One of my jugulars was "somewhat diminutive" and an a subtle stenosis couldn't be ruled out. I had a flattening of the jugular near the C-1 vertebrae and my azygos looked normal. If I would have had the Doppler sonogram it could have shown reflux if it exists in my veins but out of ignorance and bad advice, I opted not to have it done.

My next step is to send a copy of my CD to Dr. Haacke's MRI Institute for Biomedical Research in Detroit as they are asking for everyone who is scanned to send copes to them for their study. This is great because if we all get scanned and the evidence in numbers is clear, there will be no room for anymore doubt and perhaps this will help speed up getting more funds for research and equipment. I already am convinced that the stenosis and reflux phenomena are a real part of the MS equation. There are so many more unanswered questions like how does the vitamin D theory fit? Why don't Chinese people get MS?

Hopefully, in the not too distant future, we will find out everything and MS will be put to rest in the medical history books.

2010-01-21T07:48:00.000-08:00

I have No idea what this is. Tree of life?

2010-01-21T07:47:00.000-08:00

Top view of my head.

2010-01-21T07:46:00.000-08:00

Another angle.

2010-01-21T07:44:00.000-08:00

This is just another view of my veins.

2010-01-21T07:43:00.000-08:00

This is my Azygos from another angle. I was told in the written report that my azygos looked normal.

2010-01-21T07:42:00.000-08:00

This pic was labeled Azygos on the CD so I'm going with that.

MRV PICS

2010-01-21T07:38:00.000-08:00

This I'm guessing shows my left and right jugulars. Based on the written report from False Creek I can see how the vein in the left side of the image is MUCH larger than the vein on the right side. I think the False creek Doc said "somewhat diminutive".

Some Pics From My MRV at False Creek, BC

2010-01-21T07:34:00.000-08:00

I like this shot! It looks like a demon with teeth and pointy ears! No one at False Creek went over the scans with me so I have no idea what Im looking at. But I like it cuz it looks cool!

Establishing MY Base Line Symptoms Prior To Surgery

2010-01-17T14:41:00.000-08:00

I finally got my surgery date from Dr. Simka for the end of March and I am so excited! I want to write down my pre op symptoms so I can compare them to how I feel post op.

General tingling and numbness on the entire right side of my body below the shoulders. In my right hand the two last fingers (ring and pinky) are the most tingly and usually all day, every day and they get worse when I'm tired, over heated or sick. My right leg is very weak. I can walk without a cane but I have a constant limp. I can walk about a km (as long as it's not too hot) before I have to rest my leg. The foot starts to drag and then I end up tripping and falling. This becomes exacerbated from stress and/or sickness. I cannot run at all. I can use an elliptical machine at the gym, however. I work out for an hour a day five times a week by doing 1/2 hour cardio and 1/2 hour weight workout for the entire body. I also have spasticity in both my ankles all the time.

My anxiety and depression became so overwhelming that I am now taking anti-depressants on a daily basis. I have neurological pain in both my hands but usually more so in the right hand. This pain comes and goes . I can be pain free for days. I was having trouble sleeping a good, deep sleep until I went on LDN last July. I take 2mg - 4mg Detrol for bladder spasms. I don't have to wear a diaper but I get the strong, sudden urges to urinate and can have small accidents if I can't find a washroom quickly enough. My heat intolerance doesn't allow me to be comfortable at temps above 20 degrees Celsius. My balance is at a point where I can't ride a two wheel bike/motorcycle without falling over and I can't balance and walk across a log over a river. As far as fatigue is concerned I'm not doing too bad. (Years ago when I had my first undocumented attack I had the typical "mind numbing fatigue" that had me walking into walls and living in a fog.) Currently I don't have that. Thank God! The only things I notice when I get tired is that my other symptoms exacerbate.

So now with that said I am eagerly waiting to be able to compare myself post op. If this surgery just stops the MS I will be more than overjoyed but it would be nice to be able to run with my dogs, backpack and be able to live comfortably above 20 degrees Celsius.

The results of my scan at False Creek Sugical Centre, Vancouver BC

2010-01-15T11:39:00.000-08:00

On December 22 I flew to Vancouver to get scanned and find out if I indeed had the blockages that everyone is taking about in the CCSVI theory. In hindsight, I should have had the sonogram in addition to the MRV but at the time I was under the impression that an MRV was just like a venogram, when in fact, it is not. I was assuming that I would show on my MRV at least one Gross stenosis like so many others. This was not the case for me. (If I had done the sonogram it could have shown reflux if it exists in my veins.)

This is a summary of my findings for MRI of the brain, MR angiogram of the neck, MR venogram of the neck:

Findings: No previous imaging is available for comparison. The ventricles are non-dilated. The basal cisterns are patent. Several punctate and somewhat globular foci of T2/FLAIR hyper intense signal are noted within the deep, periventricular, and pericallosal white matter of both cerbral hemispheres, in addition to subcortical/juxtacortical lesions within the posterior left frontal and superior left parietal lobes. Subtle lesions are seen along the undersurface of the body of the corpus callosum. No lesions are seen with certainty within the poster fossa or the imaged portion of the brain stem. There is no MRI evidence of acute intra or extra-axial hemorrhage, infarct, or mass effect.

(This basically told me that since my initial MRI several years ago, I have tons more lesions and damage to my brain.) :( Booo!

MR Venography of the head demonstrates normal-appearing major dural venous sinuses. There is a dominance of the right transverse sinus and right internal jugular vein. The left internal jugular vein is somewhat diminutive throughout its imaged length, without evidence of a focal region of stenosis. (I'll pause here to mention that in reading other MS patients findings there are quite a few of us with this scenario i.e. one jugular is smaller than the other.) There is subtle flattening of the calibre of the internal jugular veins at the C-1 level (I am told that this can cause reflux) of uncertain clinical significance. (This means that I should have had the sonogram as it could have shown reflux there if it exists.

Cine phase contrast MR venography of the internal jugular vein with VENC set at 50 cm?sec demonstrates no significant aliasing indicative of flow velocities below 50 cm/sec. This would be more optimally quantified with Doppler ultrasound. (Again, the Doctor is even saying I should have got the sonogram)

Impressions:
Normal MR angiogram of the neck.
A somewhat diminutive left internal jugular vein.
A normal appearing azygos vein.
It would be difficult to exclude a subtle stenosis.

So, if you are going to get scanned make sure you get the sonogram/ultrasound also. Make sure that if the technicians are not trained in the Zamboni/Haacke protocols that they at least have the proper software and written protocols.

Based on this I am going to Poland for the Liberation surgery as I am hopeful that Dr. Simka will find hidden blockages and or reflux when he does the scans there.

Hope and plans if the liberation surgery fails me

2010-01-10T10:11:00.000-08:00

I don't want to be negative and I do try to focus on the more positive aspects of having this disease like the liberation surgery. I am, however, worried that because this is all still theoretical, it may not work. What then?

I always jokingly mused aloud to my family and friends that the day I am unable to walk and take care of myself is the day the ninjas I hired will come and put me out of my misery. The sad truth is I'm scared to death of becoming incapacitated and being a burden to my family. I know I could not deal with not being able to go hiking and camping, driving, shopping, walking, eating, dressing, toilet etc. The worse I get the longer the list of things I cant do will get longer. I am not strong enough to deal with that. I applaud people like Christopher Reeve, who despite being a quadriplegic, persevered up to the day of his tragic death. I, sadly, do not have that strength.

I know my family loves me. My husband and I met and got married right after I was diagnosed so he did know, upfront, that I had MS. The problem for me is I don't think he really thought the whole nasty thing through. It's human nature to deny our mortality; especially for our loved ones. I don't believe it's fair for my husband or my children to have to look after me when I can no longer care for myself. They didn't really sign up for that! The sad but brutal truth of the matter is most spouses eventually put you in a home and go on to lead their lives. Do they feel guilty for this? Probably, but what else can they do? I don't want to see my husband and kids in this no win situation.

Recently I talked with a gal who told me about a place in Switzerland where the sick can go and be taken care of in their end of days. She made that decision for herself so her family wont have to. I get that. I personally don't want to be "cared for" when the time comes. To me that's not a quality life. So that brings me to the BIG QUESTION: Will I have enough guts to euthanize myself when the time comes so I wont have to endure a living death? I guess I wont know until I'm faced with that.

One thing that gave me a bit more hope was I heard from this gal that there are quite a few new oral MS drugs that are going to be available soon. SO maybe, hopefully, if the liberation surgery doesn't work the new drugs will help us to maintain our dignity and a better quality of life for a little while longer.

2010-01-08T17:58:00.000-08:00

After much prompting from friends old and new I decided to start a blog on my life prior to having the liberation surgery and after. (I am "on the list" for surgery in Poland in March 2010.)

Before I delve into the current details of this journey I will give you some background info on myself since I was diagnosed. In 2000, at age 36, I was diagnosed with RRMS. I think the RR is for remitting/relapsing or something close to that. It means that I can have an attack and then go for often long periods of time without any attacks and or symptoms. At the time of my diagnosis I was numb from the waist down and could barely lift my feet to shuffle a few paces before I had to sit down. My neurologist could not tell me, for certain, if I was going to remain like that or get better or worse. He put me on Copaxone so I was injecting myself once daily with this MS drug. I spent a lot of time after work sitting in my backyard at the fire pit drinking and feeling sorry for myself.

After many nights of reflecting on my life, I realized that I had only one regret. (I thought that was pretty good!) I had a few invitations over the years to back pack the West Coast Trail on Vancouver Island but always thought I'd do it another time. Now, all of a sudden my legs are gone and I'm pissed that I didn't do it when I could walk. I made up my mind to rehabilitate my legs and get a group together and do to trail. The next day I joined Curves gym. I went three times a week and was exhausted. I couldn't even stand 30 seconds in between the machines because my legs were so weak, but I kept at it. I pushed myself even though my doctor said I shouldn't. My motto was "If you don't use it you will lose it". Finally, after weeks and months my body did get stronger! My stamina increased as well. I kept at it for 2 years until I finally pulled together a hiking group. I couldn't find people my age that were crazy enough to do it with me so I ended up going with my 2 young sons who were in their teens and three other friends in their early twenties. I was 38 by this time. If you've never heard of the West Coast Trail please Google it. It's 75km of difficult and beautiful terrain that takes anywhere from 4 to 6 days on average to complete. This endeavor helped me shrink MS to just a small facet of who I was.

I'm 45 now and up to the last two years, I felt that I had no attacks. Was this because of the Copaxone? Was this just the "nature of the beast"? (a natural remission) Who can say? I do know, however that the last 2 years of my life I felt a significant, negative change in my health. I really can't say that I had bonafide "attacks". I just had an almost continued exacerbation of my base line symptoms. (The symptoms, that didn't go away after the 2000 attack, that I was left with like bladder spasms, neurological pain, depression, numbness and tingling, trouble walking, trouble sleeping, heat intolerance, balance issues, short term memory problems) All these became worse and troubled me on a daily basis. I really thought there would have been a cure by then! Honestly. After talking with neuro and realizing that there was no cure in sight and probably not going to be in my lifetime I started looking into alternative therapies. I was uncertain that Copaxone was doing anything beneficial for me and was afraid of the long term effects of this drug. It is fairly new and they don't have enough information to be able to tell me if there are any long term effects and that was alarming. I was popping neurontin like candy for neurological pain in my hands, feet and legs. Some days I would take upwards of 6000mg before I got any kind of cessation from pain. I was told by my GP that the dosage was not harmful but I still had to wonder. I just don't buy it that taking that much of anything, and putting it in my body, wont affect my liver or something. Come on! I started researching on the internet for something to help stop the downward spiral I was in.

I heard about Mary Boyle Bradley and LDN. (Low Dose Naltrexone) I read Mary's book and would probably not have decided to take LDN had it not been for her book "Up a Creek With a Paddle". It's a personal account of her life with a husband struggling with progressive MS and her discovery of LDN and how it helped her husband and thousands of others. Good read!

I wont go into too much detail but it did make me brutally ill for the first month so I cut my dose down to 2mg and then slowly brought it back up to 4.5mg. I'm glad I stuck with it as after about 3 months I felt like my exacerbations were lessening. I felt better! I'm still on 4.5mg of Naltrexone and just heard that it helps the vascular system in some way.

Then I heard about CCSVI on the W5 show. At first I was extremely skeptical. I can't afford to have hope in all these drugs and treatments that I hear about as most of them ARE "snake oil" treatments made by unscrupulous people out to rob the sick of their money. The CCSVI theory made a lot of sense to me but I still remained aloof. I asked my husband if he would go on line and join some of the chat groups about it and filter the information for me. I just could not wrap my head around this theory as it sounded too good to be true and I didn't want to be let down in a big way when I found out that it was yet another "snake oil" treatment.

The strange thing was that the more info Steve filtered to me, the more convinced I became that this was plausible! I gained the courage to go and chat about CCSVI on line all by myself! It was amazing when, on a day to day basis, I would see the naysaying MS Societies taking back back their negative stance on CCSVI and making a public statement that they would be funding CCSVI studies. To me that was miraculous!! As the days went by and more evidence piled up that CCSVI was relevant I realized that it still could be years before it was approved for North American doctors to perform the liberation surgery. Years for me is out of the question! I am at the point where if I don't stop the progression completely, NOW, I know I will be in a wheelchair very soon. (I don't want to sound callous about the wheelchair as I know there are people out there who wish they could get around in a wheelchair but instead are stuck in their bed 24/7.)

I found out that Dr. Simka in Poland was doing the liberation surgery and I got on the list for March 2010. In the meantime, I decided to get scanned and see if I had the blockages or "stenosis" that everybody was talking about. I feared that if I flew all the way to Poland I would end up being that 1% that doesn't have operable blockages. I went to False Creek Surgical Centre in Vancouver, BC and had an MRV. I didn't have the ultrasound, and in hindsight I wish I had, as it could have shown if I had any "reflux" which is slow drainage or a back up. It did show that I had one jugular vein much narrower than the other and a subtle flattening of the jugular near my C-1 vertebrae. This was good enough for me. I now am awaiting my surgery date in March. Until then I will continue writing letters to politicians and doing my fund raiser for UBC CCSVI Research.