Panaceia or Hygeia

immunize yourself against the pandemic of lifestyle diseases

Zamboni’s “liberation” scam for MS can kill

Posted by Colin Rose on November 19, 2010

No one would be denied treatment in Canada for a real jugular vein thrombosis if it were causing any specific symptoms such as pain or swelling in the neck. What I gather from the news report is that the only indication for IV thrombolysis was worsening of his MS symptoms which were ASSUMED to be due to a clot in the stent. If one has spent $30,000 on a treatment that one is convinced must be a cure, one is reluctant to accept that it doesn’t work and that relapse must be due to restenosis requiring more “liberation”. Inserting stents into normal thin-walled veins is hazardous. If the vein were torn it would be very hard to repair. Marcial Fallas, the Costa Rican doctor now claims he didn’t want to use a stent. So why did he? Is there the slightest evidence that a stent would have given Mostic “his life back?” How much extra did Fallas charge for inserting a stent?  Is this professional behaviour?

Mostic obviously bled to death internally. Without an autopsy one can never know from which vessel. My guess would be that the stent tore the IJV or the subclavian vein and that he bled into his chest, possibly when clot that might have been blocking the tear was dissolved with thrombolysis.

I predicted such tragedies a year ago when CTV announced this “breakthrough” in MS treatment. Those advocating unrestricted “liberation” on demand now have blood on their hands.

——————————————–

Man dies after controversial MS treatment, doctor says

By ADRIAN MORROW
Globe and Mail Update

Patient had returned to Canada, but went back to Costa Rica after blood clot developed

A Canadian man with multiple sclerosis who travelled to Costa Rica to undergo a controversial procedure in June died from complications during follow-up surgery, his doctor said Thursday.

Mahir Mostic, a 35-year-old resident of Niagara Region, went to Clinica Biblica in San Jose last June to be given “liberation therapy,” a procedure in which neck veins are opened up, in hopes of improving blood flow from the brain.

The treatment is based on an unproven hypothesis advanced by Italian doctor Paolo Zamboni that MS is caused by poor blood circulation from the central nervous system, leading to buildups of iron. The procedure is not performed in Canada.

Mr. Mostic’s Costa Rican doctor, Marcial Fallas, said he tried unsuccessfully using balloon angioplasty to open up his patient’s vein, before resorting to inserting a stent, a riskier procedure.

“We are not okay with the idea of a stent,” Dr. Fallas told the Globe and Mail. “But he was desperate, he wanted his life back.”

Mr. Mostic, who had been diagnosed with MS three years ago and had difficulty walking, thought it over and opted for the stent, Dr. Fallas said.

At first, Mr. Mostic showed improvement, but his MS symptoms eventually returned. An ultrasound showed his stent was 80 per cent blocked, Dr. Fallas said.

The doctor said Mr. Mostic returned to the clinic in October, and he was injected with medication in a bid to dissolve the clot. The day after the procedure, his blood pressure began to drop and Dr. Fallas suspects he suffered internal bleeding. Doctors tried to find the source of the bleeding, but to no avail. For religious reasons, his family requested that his body not be autopsied, Dr. Fallas said.

Mr. Mostic’s family declined to comment.

Dr. Zamboni’s hypothesis – called chronic cerebro-spinal venous insufficiency, or CCSVI – is highly contentious. While the medical community generally regards MS as an auto-immune disease, many sufferers have undergone the procedure, crossing borders to do so.

Some have reported blood clots similar to those Mr. Mostic suffered, but have had trouble getting follow-up care in Canada, said Diana Gordon, a Barrie woman who was given the treatment at a clinic in the United States in June.

“When [Mr. Mostic] got back, he should have been allowed surgery after-care, it should have been no problem,” she said. “People don’t have the funds to travel to other countries.”

Researchers in Canada and the United States are studying CCSVI, while Saskatchewan has offered to fund a clinical trial to test the effectiveness of the vein-opening procedure.

16 Responses to “Zamboni’s “liberation” scam for MS can kill”

  1. beveikrimtas said

    Yes, this was obvious from the beginning. And, unfortunately, it is just the tip of the iceberg.

    Joan Beal froze her FB wall today after the post from one of members, who witnesses 3 more dead in Costa Rica, was appeared approximately one hour ago.
    Of course this post was removed.
    I would recommend to the author of this post go to TIMS where posts stay, because, by their policy, they don’t remove published posts.

    • Colin Rose said

      Can you give us the link to the original post in TIMS?

      • beveikrimtas said

        I saw the post claiming that three more deaths after CCSVI treatment had place in Costa Rica. There were 2 comments on this post with inquire to clarify the information. Then, all of sudden, the post was deleted and the FB page’s (Joan Beal’s CCSVI and MS) wall was disabled.
        That’s why I asked the author of this post go to TIMS and re-post it there. So far no new posts on TIMS. I’ll keep my sharp eye on this and let you know about further developments.

        I’ll comment later on your previous posts when time allows.

        Thanks for being honest with people, truth will prevail.

        BR

  2. moreconcerned said

    This is what “cheerleader” said on ThisisMS about the other two deaths:

    this was written by a competing medical tourism company, Rox. it is not true. I froze the wall today on Facebook, and removed the rumors that were being put out by this woman in an attempt to generate business for her company. Truly unbelievable.
    cheer

  3. beveikrimtas said

    There is a discussion on TIMS about this http://www.thisisms.com/ftopict-14680.html

    Q:
    Someone living in Costa Rica said:
    “This is the third death alone here in Costa Rica…source…directly from Doctors at that Clinic and from other Doctors my family is related to. My sister is a specialist Doctor here in Costa Rica and so is her husband.”

    JB answer:
    this was written by a competing medical tourism company, Rox. it is not true. I froze the wall today on Facebook, and removed the rumors that were being put out by this woman in an attempt to generate business for her company. Truly unbelievable.
    cheer
    /end of Q.

    It is hard to tell who that woman was, but the “cover up” maneuver was obvious. What to expect else from the person who is making money from CCSVI hype.

    Truth is that the real situation with CCSVI Treatment is not known. MS people flock to CCSVI shops from different countries, the real outcome is untraceable.

    More and more people started posting about their worsened conditions like this one:

    “I could have died from the thrombosis in my left jugular which clotted with NO stent.
    I got on a plane unable to see properly, unable to breathe, feeling exhausted. My heart was racing and I honestly thought I was not going to make it. (sorry for the drama but its the truth I was seriously ill)
    I walked into A+E in the UK and after 10 days on heparin I had my neck cut open to try and remove the huge clot that had formed, parts of it had broken off and had entered my lungs.
    All I am saying is I could have died had it not been for the dr’s in the UK getting me on heparin asap and for helping me.
    People do need to know the real risks involved with this procedure because they do exist.”

    Need I say more?

    My estimates for CCSVI “treatment” are:

    Mortality rate: 1: 700-1000,
    “Restenosis” rate: 50-70% in 12 months period.

    I put quotation marks on the word “restenosis” for a reason. In reality, there are combined complications from venous angioplasty: acute balloon injury of the vein wall and acute thrombosis, or post-traumatic thickening of the veins wall and secondary thrombosis. Secondary means delayed; usually 5-6 months after, comparing with acute thrombosis which occurs within first month period, usually within first few hours or days.

    You maybe be aware that balloon injury is associated with a complete loss of the EC (endothelial cells) lining. Even if complete re-endothelialization occurs, the regenerated endothelium shows abnormal morphologic characteristics. In contrast to normal ECs, regenerating ECs grow as a sheet with close cell-to-cell contacts, no longer aligned with blood flow and are polygonal-shaped and irregular-sized with cytoplasm bulging toward the lumen. Also there is limited re-endothelialization at the injured site (the wall of the vessel) within 1 month of balloon angioplasty while extensive re-endothelialization occurs between 1 and 5 months.

    • maldendj said

      If your estimates for CCSVI “treatment” are roughly close about real, it is a tragedy.

      • beveikrimtas said

        Well, it depends what you consider a “safe” procedure.
        Please compare the given numbers with overall mortality rate of arterial stenting: 1: 30-50, or 2-3%. Of course it is a minimal rate, it always depends on location of stenting, and sometimes m/r could be up to 40%. As you see the m/r of venous angioplasty are considerably lower, you decide is CCSVI treatment “safe” for you or not.

        What you miss, as many others, there are always 4 groups of patients after any kind of surgical intervention:
        1. Positive outcome,
        2. No result – the same,
        3. Worse (includes complications and progress of primary disease, adverse reactions, etc),
        4. Dead

        In CCSVI case we see an example of skillful manipulation with data (I call it a “Jude’s kiss”), when all patients after treatment were sorted in 3 groups using specific approach:
        1. Drastic Improvement
        2. Moderate Improvement,
        3. No Improvement.

        Make your own conclusion how that happened.

        I advise you to re-read my last paragraph of previous comment about endothelial cells (EC) after stenting. Maybe you can compare the described outcome with the latest Zamboni’s statement:

        Quote -“CCSVI is composed of several blockages in the main outflow routes, the jugular vein, azygous vein, but this is very important to understand,” he said, displaying angiographic and high-resolution B-mode images along with a specimen, these blockages “are merely intraluminal defects; not problems in the wall, but intraluminal defects: webs, membranes, malformed valves.”

        That’s what exactly will happen to even absolutely healthy vein after ballooning. Additional damages to jugs will include traumatic deformations of IVJ valves, with increasing incompetence, after repeated catheterization (even without ballooning!).

        In plain words: the vein will never be the same.

        Another piece of advice: never ever trust a plumber who says that he can fix a supercomputer “on the spot”.
        But if it makes sense for you – go ahead.

  4. The death was certainly a tragedy. That is precisely why more research- and open minds- are needed.

    If anyone is taking advantage of the desperate, it is the medical tourism companies. With no other options available to them, this is what some patients unfortunately decide to do. We need to make the treatment viable in home countries- including follow up care- so that the patients receive the after-care that is required.

    As someone who has had the treatment done (relatively locally), I can speak personally to its benefits. I don’t claim this to be a cure; nor did I have expectations of such. But the surge in energy, the immediate cognitive recovery and the reduction in many of my daily symptoms are impossible to ignore.

    Prior to my procedure, I had a Doppler ultrasound performed at a local IR who had no knowledge of CCSVI. Further, the IR did not feel that stenosis of the veins was a chronic condition at all. This IR was part of a prestigious hospital, had a cardiology background and worked closely with many lead doctors across a variety of disciplines, including neurology. The Doppler indicated that “something” was wrong with my IJV’s- the right IJV sounded nothing like the left IJV, and the right IJV did not sound normal at all. They were not certain what to make of it, but clearly something was amiss.

    When I had my procedure done, it was discovered that I had serious stenosis in my left IJV with significant collateral veins present. My right IJV was huge in comparison to the left, but still had stenosis near the clavicle. My azygous vein was also stenosed, with collaterals. I required angio (not stents) in all three.

    Upon leaving the hospital that afternoon, I could walk heel-to-toe without falling over for the first time in years. I did not expect that to happen, but it did. When I returned home, I could squat and recover without assistance for the first time in years- didn’t expect that either. Since, I can take a nap without it becoming a five hour event and awake refreshed. I can work a twelve-hour day at the top of my game.

    I have been on several medicinal regimens for my MS, including chemo. Nothing helped me feel the way I do now.

    That said, I do have a new symptom with leg numbness. I don’t know what it means- could be restenosis, could be a relapse. But I do know that I am in no way worse than I was before. In fact, I can actually manage this new symptom without interrupting my very busy work and personal life- that would not have been the case before the procedure.

    We can completely discount anecdotal evidence- that is fine. But I am not willing to absolve all of my results, particularly those results that I did not expect and can’t attribute to placebo. Ultimately, the truth will win out, whether or not those of us on either side of the argument is ready for that truth or not. But I tell you- any scam that can restore me to the viable, energetic and productive life I have now is a scam that I will gladly partake in and relish. :)

  5. chiefumtaga said

    It seems unusual that so many patients report near instaneous changes in their symptoms after having the Liberation therapy. Since Dr. Zamboni’s conjecture was that iron builds up over several years due to “back pressure” caused by stenotic veins, if this build up of iron was the mechanism that caused MS, it should take a while for it to be removed (weeks, maybe months)? In my opinion the sudden dramatic changes are partly placebo, partly expectation (a patient being told they will be Liberated after this procedure is not likely to be skeptical).

  6. Chiefumtaga, I am actually one of the most critical people you will ever meet. I genuinely did not have any expectation for immediate benefits at all. Rather, I viewed the procedure as a way to prevent further damage. I was as surprised as anyone just how quickly I felt better- and in the ability to do things that I had no idea I would be able to do.

    Here is what we don’t yet understand- and why more research is needed- why do patients feel better right away? Write off any “subjective” benefits if desired, such as an increase in energy and cognitive benefits, and look at some of the improvements that can’t easily be attributed to placebo.

    In my case, I could do the heel-to-toe walk as I was leaving the hospital that day. Why? What about the procedure would immediately improve my balance in such a dramatic way? Others can walk unassisted for the first time, track eye movement normally, etc. If these symptoms are neurological in nature, then how can they be overcome so quickly with an angioplasty? It’s worth examining.

    We continue to base a lot of our understanding of MS on traditional beliefs. We look at it as an autoimmune disease. We look at lesions as indicators of progression. What if lesions were the body’s way of protecting the brain against excess iron? What if MS is not autoimmune at all? What if many of our symptoms are tied to blood flow issues that are alleviated by restoring proper blood flow, while others will require time to resolve?

    There are other cognitive vascular diseases that do not become symptomatic until decades later- and there is immediate benefit upon restoration. I am not saying that CCSVI falls into this camp necessarily, only that before we write off all the benefits we have seen (and continue to see) as placebo, let’s do the research.

    After all, none of the currently available MS treatments can claim to halt progression and yet carry significant risks. Tysabri cannot even explain how it may work. While all this ambiguity is accepted, is it to much to ask that we look at this theory seriously and take the benefits seen in patients seriously?

  7. maldendj said

    “…Why do patients feel better right away? Write off any “subjective” benefits if desired, such as an increase in energy and cognitive benefits, and look at some of the improvements that can’t easily be attributed to placebo…”

    Procedure (balooning/stending) itself is unnecessary. Impovements are caused by prescribed anticoogulants. Aspirin is a pain reliever with known anti-inflammatory effects. Antiinflammatory steroids (or corticosteroids) have good efects in MS pulse therapy – we all know this, I personaly with Solu-Medrol infusions. Aspirin and plavix have the same anti-inflammatory efects on some MS symptoms (fatigue, brain fogg). But those efects are short term efects. And when those efects fade, we fell into “restenose” phase…
    Best regards, Mladen.

    • @Maldendj- I won’t discount the anticoagulant effects…but what of those that did not receive anticoagulants?

      I have had a dozen rounds of Solu-Medrol- to devastating effects. It got so bad that I swore off of Solu-medrol forever.

      So how can two people with the same disease have two completely different reactions to a known anti-inflammatory? Could it be possible, then, that two people can partake in the liberation treatment and have different effects?

  8. chiefumtaga said

    Unfotunately I doubt we are seeing the results of all the MS patients that have had the “Liberation Treatment”. I cannot dispute the improvements you state, but there are some reports in the media about MS patients that experienced no improvement (or had negative outcomes) after going for venous balloon angioplasty (and/or stenting)of their cranial venous anatomy.In regards to MS patients stating how they’ve improved after treatment, one can find YouTube videos of MS patients claiming how much better they can move ( eg. walking for the first time in years or no longer needing a cane) after a faith healer cured them. Also William Nolen wrote in “Healing: A Doctor in Search of a Miracle” (on pages 72 to 76) of an MS patient claiming to be cured by noted faith healer Kathleen Kuhlman. Marilyn felt a burning sensation in her spine and left her wheelchair and walked on stage. I like Dr. Nolen’s note, “Marilyn wants so badly to get better that she will interpret anything that happens to her as evidence that she is improving, that she is being cured. She may even function better physically if it is suggested to her that she can do so”. And in the late 1950s it was hypothesized that ligating internal mammary arteries could reduce angina (by increasing blood flow through coronary arteries). However the mechanism and actual effects were controversial so a sham operation was done, the control group was told they had the procedure done when they had no artery ligation done. The relief of angina symptoms were the same in the sham operation group and the group that had the artery ligation. See “The American Journal of Cardiology, Vol.5, Issue 4, April 1960″. See Dr. Nolen’s comment about patient’s interpretations that can be applied to improvements following any type of intervention.

    • Chiefumtaga, here is where I differ. After my relapse in 2008 (which was quite a doozy), I did not regain feeling in my left hand. To this day, my left hand is numb. Boy oh boy, would I really like to have feeling back in that hand. Really, really would.

      But I don’t.

      I have had a lot of improvements that I did not expect from the procedure. But the one I really wished could happen did not. If I were to attribute all of this to placebo/faith healing/whatever, then my hand would feel better, too.

      At the end of the day, and as Dr. Rose points out below, go ahead and perform double-blinded studies. Get to the bottom of it, one way or another. There is something to this theory- figure out what it is and either offer it up to all MS patients or be done with it altogether. Even Dr. Zamboni, vilified on this board, has asked for more research to be done. No one is against getting answers to a disease that is not forthcoming with any answers at all.

      For the record, I have over 30 lesions in my poor little brain. I have seen those with only a couple of lesions fare worse than I have (even prior to the procedure) fared. There is variability in this disease, to be sure…but we can’t attribute “spontaneous remittance” for the benefits seen, either. What has been alluded to is that patients simply aren’t going through a relapse when they feel better; only someone who does not have this illness can make such a statement. Even when we are not in relapse, we are fully aware of our disease- the symptoms never fully vanish; relapses just make it very apparent. The analogy I will make is that the day-to-day symptoms are like a whisper while a relapse is like a scream. For those of us that have undergone the procedure and don’t hear the whisper anymore, the benefit is undeniable and not attributable to one of our remittance periods.

  9. Colin Rose said

    Well said, chiefumtaga. Subjective symptoms of any disease are ripe for exploitation by faith healers and charlatans of all stripes. MS patients are particularly prone to the mirage of a simple instantaneous “cure” because of the very prolonged and variable nature of the symptoms. Many just give up trying to struggle with the weakness and use canes and wheelchairs that probably weren’t necessary but with the hope of a cure they rediscover that they didn’t really need them.

    If anyone other than Zamboni and his acolytes can first figure out how to diagnose “CCSVI” while blinded to the patient’s MS status, then a randomized trial or “liberation” with sham-operated controls is essential before this “treatment” deserves public funding.

    • Dr. Rose, with all due respect to your profession, opinion and skepticism, I have to tell you that your base assumptions of this disease are completely off; you do your opinions and audience a disservice with over-generalizations and broad assumptions.

      “Many just give up trying to struggle with the weakness and use canes and wheelchairs that probably weren’t necessary but with hopes of a cure they rediscover that they don’t really need them.”- Quote

      I sincerely hope you never have to feel the agony- and I do mean agony- when your legs become so painful that the slightest movement brings tears to your eyes. Or the sudden moment when you are standing in the kitchen- making dinner, feeling fine- and have your legs suddenly give out on you. I hope you never have to face a flight of stairs while struggling with foot drop. I sincerely hope that you never have to have your loved one help you into your chair in the morning, looking at you with painful eyes, knowing you would get up yourself if you could.

      I hope you never feel these things, Dr. Rose, because we know what those things (and much, much more) feel like.

      But I will tell you what some of us do not feel- resignation. There is a spirit inside those with the disease that make us fight to simply be normal. We don’t give up and use a cane or wheelchair because the “struggle” is too hard. If you had this disease- and I hope you never get it- you would know that the last thing we want to do is give up. We succumb to those things because our bodies fail us; we have no other choice.

      Just as it would be inappropriate of me to make statements about cardiologists’ motivations, please don’t make statements on how MS patients deal with the disease. It makes you appear elitist and uninformed; clearly that is not how you wish to appear to your audience. Thanks.

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