Sunday, April 11, 2010

Important New Canadian TV Segment on CCSVI

CTV Hot Air Balloon

Image by Kevo89 via Flickr

CTV, the Canadian television network, has produced a very significant follow-up segment (click here) to their original piece on CCSVI (click here), which aired back in November. The original piece was largely responsible for the frenzy over CCSVI that has gripped the MS population, and this new piece is a worthy successor.

This well produced 22 minute segment focuses on the battle between MS patients demanding action be taken regarding CCSVI, and the mainstream medical establishment’s resistance to taking such action. Featured in the piece are profiles of patients who have undergone the Liberation Procedure to varying degrees of benefit, and interviews with some of the vascular physicians who have started to recognize the possible importance of treating MS patients who have abnormal venous anatomy.

Dr. Mark Freedman, one of Canada's foremost MS neurologists, is on hand to offer the arguments against taking aggressive action to investigate CCSVI, and although the points he makes are theoretically sound, in the face of the mounting (albeit so far mostly anecdotal) evidence, seem hopelessly behind the curve. Although I don't think he comes off very well here, I would like to point out that Dr. Freedman has previously done some groundbreaking MS research, including using stem cells to treat MS, so his strident resistance to the idea of CCSVI is somewhat puzzling, and certainly distressing. If doctors of his caliber were to get behind research into CCSVI, the road to authoritative answers would be that much shorter.

Clearly, the vast implications that CCSVI has on the hundreds of thousands of patients suffering the quite literally crippling effects of MS demand that the scientific community take immediate notice and endeavor with much haste to either prove or disprove the theory. Given that the CCSVI hypothesis itself is fairly straightforward (although with further study I expect it will probably prove to have its complications), with proper funding it shouldn't be very difficult to launch definitive studies quickly and with scientific integrity.

This new segment also introduces us to Austrian physician Dr. Franz Schelling, who first picked up on the link between vascular abnormalities and MS in 1980, and has spent the better part of the last 30 years trying in vain to get the medical world to listen. He learned of Dr. Zamboni's initial work on CCSVI through the Internet, and initially contacted him with information gleaned from Google.

The CCSVI story, however it turns out, demonstrates both the power of the Internet, and the massive importance of well-informed patients steadfastly advocating for themselves and their fellow MSers.

Power to the people, right on...

I'd like to remind everybody watching this piece that despite the enthusiasm for CCSVI on the part of its producers that it clearly reflects, an enthusiasm shared by a growing number of patients (myself included), CCSVI still resides in the realm of theory rather than fact, so we must try to temper our fervent hopes with at least a modicum of healthy skepticism.

That said, I sure wish my Liberation Procedure had been successful in opening my blocked jugular. Oh well, if at first you don't succeed...

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  1. I would fly to Poland tomorrow to get the procedure done tomorrow if someone, anyone, could tell me what the risk of stroke is.

    Angioplasty, hell any vascular surgery for that matter, has a risk of stroke and the closer to the brain the more risky it is.

    My MS isn't all that bad at this time and I'm not advocating for anything until the risks of help outweigh the risks of harm.

  2. The weak point in Freedman's comment was he wants proof there is a relation of the narrowed veins with MS. After that proof he is willing to set up research for treatments.

    For me it is all about there is evident relation between the liberation treatment of narrowed veins and disappearing of several symptoms of people whom happen to have MS.

    No more, no less.

  3. Fabulous show. It disgusts me that even being tested is discouraged here in Canada. MS or not, blood flow issues can't be a good thing!
    I agree with the gentleman in the video that we should be allowed to make that decision for ourselves.
    I'm 36, in a chair full time and declining rapidly. I don't have years to wait for research and I'm willing to take any risk. I'm on the verge of being trapped in a useless body, my mind begging to be let out. Even if it only let me have a few more months before that happened, I would take it. I would risk death and further disability because those things are looming on the horizon anyway.
    I have to wonder how these naysayers would feel if they or someone they loved had MS.
    So yes, I am putting all my eggs in one basket,taking a giant leap of faith, betting it all- I'm going to Poland. Yep, maybe they won't be able to help. Maybe it won't change a thing for me. Maybe it will only help for a brief period before the veins stenos again and the money and time spent will have been wasted. But I can hope, and hope for me is worth the price of admission.


  4. Thanks for the CTV clips on CCSVI. Very informative. Here’s the question I would like further CCSVI research to answer. Is CCSVI the cause of MS or is it itself the result of a separate inciting event, whether genetic, viral, bacterial et al.? Is CCSVI then only a palliative and not a cure? My question becomes even more complex when considering the characteristics of the initial inciting event/circumstances. Are the inciting agents still active or are they now dormant, but having unleashed a concatenation of symptoms manifesting as MS? If the latter, it is possible that the Liberation treatment might be a “cure,” though not because it is addressing the original cause of the problem. It is simply curing the result of the resulting venous insufficiency, whatever caused CCSVI to happen in the first place. In any event, I believe using something like the Liberation treatment is probably advisable since it corrects at least for a time a present deficit, insufficient venous flow. That deficit, whatever its cause, will trigger undesirable bodily response and therefore should be corrected.

  5. My MS (D. 1990) went from benign (insufficient benefit from the drugs to compensate for the side effects) to SP (Copaxone et al won't help you). I am lucky to be still walking (very slowly) and working full time (programming). But my MS is eating away at what I can do. Like being no more than a short lurch to the bathroom.

    I am trying to balance "I want it now while I can still walk" against "what if the treatment doesn't work or has unforeseen complications?".
    (I removed a couple of paragraphs of ranting about the MS Orthodoxy and the Ethical nightmare of deciding who goes first)

    For now? I wait for more evidence, make some tea, and get back to work - doing what I can as long as I can. All I have control over is my own behaviour. So - time to practice that...

    Anne in Toronto

  6. As a Canadian , I'm embarrassed that one of our eminent MS Docs comes across on national TV as such a small minded man. Sure seems like the good Doc is threatened by the commonsensical approach to the MS quandary. It doesn't fit in with his domination over the ailing and desperate. I'm sure big pharma has provided a comfortable nest egg for his next move.
    We the people(MS'rs) know of our rights, we just have to make some noise, loud enough and long enough so that the politicians and the Health community hear the logistics behind the Vascular debate.
    I know first hand of the most vocal participant in the W5 show. He didn't possess the abilities prior to the treatment that he showed on W5. He has made remarkable recovery in multiple areas. to quote Steve following the filming he says "If i am in dreamland with what Liberation has done for me...i only ask two things. 1/don't wake me up 2/give this dream to every M.S. patient." He knows what we should all experience.
    Having said that, there is some learning curves as Marc(WCK)well knows and is volunteering to front this educational path for we the MSr's.
    Thanks Marc, I owe you a coffee when I venture down to the Big Smoke. After I have my liberation procedure done.

  7. Thank you for the link.

    How are you doing since your proceedure?

  8. Open heart surgery addresses the symptom not the cause. I am dumbfounded why we need to close the gap of knowledge between cause and outcome. If correcting the blood flow is akin to triple bypass surgery for someone that ate to much fat would we be even having this conversation? My mom fell in a restaurant and broke her leg. She was rushed to the hospital for emergency surgery to correct the outcome of the fall. No one stood around and questioned why she fell. Was it an eye issue (macular degeneration), was she not focused (dementia)? There were no interviews or consultation with national experts on women in their 80’s and broken legs. They called an ambulance did ex-rays and drove a rod into her femur, problem solved. Let’s get started with the testing while they figure out the best way to proceed. Which came first the chicken or the egg; for me is reduced to either a sandwich or an omelet? I am hungry so let’s get moving. Great people are wasting away.

  9. Hello everyone,

    To all of my fellow MS'ers please consider the following regarding CCSVI.

    1. Has anyone died from the CCSVI procedure ?

    2. Why are so many people interested in and closely monotoring the CCSVI progress ?

    3. What financial gain do drug companies receive if the CCSVI and further associated developments/improvements occur and assist in the improvement of MS ?

    4. If angioplasty is currently used to assist in restructuring heart blood flow issues, then what danger is there by using the CCSVI procedure to help aleiviate our MS symptoms ?

    5. We have to keep focused,our eyes, ears and minds wide open to the new facts and developments concerning CCSVI. Is there a main site that is available on the Web to monitor the progress of CCSVI ?

    Personally I beleive there will be some mistakes made along the path with CCSVI but I generally think that the benfits will be extremely beneficial to MS sufferes.

    We must be vigilant in keeping an honest and very well informed account of the rapid growth of the CCSVI procedure for it to grow and flourish for our common benefit and hope for present and future sfferers of MS.

    Thankyou for your time.


  10. My wife has spms now and was originally diagnosed in 1971. I would love for CCSVI to be the answer, but it doesn't quite make sense. If this is indeed the cause and not the effect of MS, then how could one explain the geographic incidence of the disease. People in
    Scotland, Canada, England and other cold weather climates just happen to have more venous stenosis than those living in warm climes like the carribean? If venous stenosis was indeed the cause of MS, then there would be no distribution differences worldwide.


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