Liberation therapy: the ‘wave of complications’ breaks

Zamboni’s research almost certainly has to have been junk

by Colby Cosh

A group of Calgary neurologists has published a report on foreseeable complications faced by locals who have returned from going abroad and receiving trendy “liberation therapy” for multiple sclerosis. It is not clear whether the casefiles include the woman who was inadvertently liberated from the world by the treatment, but their contents sound troubling enough. “These five cases,” the authors note in their abstract, “represent the beginning of a wave of complications for which standardized care guidelines do not exist.”

They sound somewhat nervous, don’t they? It is almost as if they had not heeded the repeated reassurances of journalists and “liberation” enthusiasts that venous angioplasty and stent installation in major neck veins are routine procedures, of about as much clinical concern as having one’s shoe size measured. That tricky little distinction between veins and arteries turns out to be fairly important to the discussion: as an April letter in Clinical Neuroradiology pointed out, “Balloon dilatation and stent implantation have not primarily been developed for the venous system and are associated with a substantial risk for complications…with possible fatal outcomes.” [Emphasis mine]

Since the butcher’s bill is beginning to be drawn up, and not just in Calgary, it may be worth examining how well the “chronic cerebrospinal venous insufficiency” theory has fared over a full year of research. In April, SUNY Buffalo researcher Robert Zivadinov, a close colleague of CCSVI theorist Paolo Zamboni, delivered a controlled study of 500 patients that offered, at best, feeble confirmation of Zamboni’s original results. Zivadinov’s findings, as Colleague Anne Kingston pointed out at the time, could conceivably provide some comfort to both sides of the debate. But the one thing one could not possibly do with Zivadinov’s figures was to reconcile them with Zamboni’s original study, which claimed a perfectly sensitive, perfectly specific link between indicia of CCSVI and the presence of MS.

In the meantime, other results from preliminary studies of CCSVI and MS have been trickling out, to less fanfare. There is a cruel unrelentingness to them—a lamentable finality even to the titles of the articles. From Italy alone we have “No evidence of chronic cerebrospinal venous insufficiency at multiple sclerosis onset” (January); “Proposed chronic cerebrospinal venous insufficiency criteria do not predict multiple sclerosis risk or severity” (July); “Progressive multiple sclerosis is not associated with chronic cerebrospinal venous insufficiency” (last week).

A German team attracted some attention in January with a finding that “Intracranial venous pressure is normal in patients with multiple sclerosis”. A similar study from a VA hospital in Texas, using Zamboni’s own detection criteria to define the presence of CCSVI, was published earlier this month. The title: “No Cerebral or Cervical Venous Insufficiency in US Veterans With Multiple Sclerosis”. Meanwhile, the journal Neurology has a preprint from Greece which confirms the objectivity of the proposed CCSVI criteria—but also confirms the absence of any apparent link with MS. And for what it’s worth, a June study of animal models provides a smidgen of evidence against Zamboni’s speculation that vascular problems create autoimmune difficulties by causing localized deposits of iron to be left in the brain.

There is also the new study you might have read about which establishes that most of the gene markers statistically linked with MS are known to influence the immune system. For my money, that is actually an overhyped blow to the Zamboni hypothesis, in comparison with the lengthening train of papers finding no simple empirical connection between veins and MS at all. Most researchers agree that the CCSVI hypothesis is still worth following up with randomized controlled trials of larger size and longer duration. But they advocate this, not because there is any doubt that MS is fundamentally immunological, but because some far less radical variant of Zamboni’s idea might conceivably be, well, sort of true-ish. (See, for example, this note from neurologists in Erlangen: “…it certainly seems awkward to think of the complex disease MS solely as result of a simple venous outflow obstruction. Yet, the investigation of new vascular concepts as one variable in the pathophysiology of the autoimmune attack seems very worthwhile…”.)

Other researchers are frankly not so open to keeping up a chase that was, after all, set off by a study (Zamboni’s 100%-specific 100%-sensitive investigation) that almost certainly has to have been junk. The frustrations of a few scientists are discernible in the literature: one German group basically thumbed their noses at CCSVI by calling it the “perfect crime”—a supposed primary cause of MS that seems to leave no trace when sought in MS patients, using any means, by anyone but Zamboni or his very early supporters. Another comment in a senior journal asks whether CCSVI is “science fiction”. Either way, unfortunately, the premature enthusiasm for “liberation therapy” is cold inescapable fact.

(For those late to the party, some links to my previous discussions of CCSVI and “liberation”: I, II, III, IV. Bonus explanation of statistical specificity and sensitivity here.)




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Liberation therapy: the ‘wave of complications’ breaks

  1. There is no evidence whatsoever that liberation therapy has helped a single person. How do we know it is not all just a placebo? Until we have a double-blind placebo-controlled trial, there is no way of knowing. All of the anecdotal reports (‘I feel less fatigued’, ‘less brain fog’) sound very much like the placebo effect.

    • I know it is not a placebo as bladder control is not “voluntary”, heat intolerance is not “voluntary”…my doctors agree!  My neurologist is doing dye MRI’s with me to show my progress… get over yourselves and see that for some, this treatment is life saving!!

      • Um, it sounds like you don’t actually know anything about the placebo effect. All of the ‘effects’ of the placebo effect are involuntary – pain, fatigue, etc. When have you ever heard of voluntary pain? That would mean that it was not a real symptom, i.e. the person was just faking their illness!

        • Bob, please educate yourself. http://ccsvi.org/index.php/the-basics/faqs

        • NICE in the UK has just authorized what look to be proper treatment trials for CCSVI, let’s let go of fear & hatred and try supporting new ideas!  The world is not flat Bob… did you hear?

  2. Ladies and gentlemen, tonight’s feature match: Scientific Reality vs. Blind Faith.

    Ooh, Blind Faith just took a hard punch to the kidney…let’s see if he can get up from this one.

  3. Many Canadian Patients did the procedure with good results 
    the procedure complications are similar to any other angiographic intervention 
    The liberation procedure will help many many MS patients 
    Interferon has a lot of complication rates ,specially on the immune system and other body systems 
    most of deteriorated patients are taking interferon….it is of a little value  and it is good business 

    • Sentence 1: What’s a “good result’? Are you speaking of the people you have talked to? Have you talked to those who arrived at this calgary hopital? Proof, please.

      Sentence 2: Complications are similar? You have data? Neat. Please share.

      Sentence 3: “Will help”? Have you done your own clinical study? Please show your data.

      Last sentences: Interferon has complications. So does an uninterrupted series of flares or ‘attacks’. Is a reduction in these flares and the long term damage caused by the progression of MS worth the risk of some flu-like symptoms and a slightly elevated risk of liver cancer 20 years down the road? Most dctors seem to think so. Little value? No. Some value. And is it good business? Sure. Does that automatically make every pharma corp part of a conspiracy?

      Summing up: You saying “It does SO work” with no proof does nothing to convince anyone not already convinced. If you need some PR help, I know some people.

    • I am one of those Canadians who’s having great results!  I was treated July 21, 2010 & am still light years ahead of where I was before treatment!  The neurologists are having an ego/money based reaction which must stop!  They are endangering lives by taking the stance they are!

      • It’s not ego/money, it’s science. There is no evidence whatsoever that liberation therapy has helped a single person. Saying ‘it helped me’ it meaningless, as it could easily be the placebo effect. The theory is dubious and the science is stacking up against it.

        • Science recognizes the validity of multiple case reports as a basis for further study.  There have been an estimated 15,000 CCSVI treatments performed in the United States and other countries around the world with about 10% being Canadian.  Based on clinical follow-up, which is supported by personal feedback to CCSVI pages on Facebook and other social media the best estimate of results is 1 out of three experiences dramatic improvements (getting out of their wheelchairs and walking again sort of dramatic), 1 out of three experience moderate improvements in their MS symptoms and 1 out of three experience no improvements.  The treatment, including all travel and accommodations, is approximately 25% of the latest drug based DMT’s (Disease Management Therapys).  With an improvement rate in over 60%, of patients the CCSVI treatments are twice as effective as the 30% attributed to the latest DMTs with their risks of heart attacks and brain fevers (PML) and other nasty side effects.  (BTW 30% is within the range of placebo effect)  There is no question that there is an immunological component to MS but scientists have been trying for over 60 years to prove that MS is an autoimmune disease without success.  Perhaps it is time for some new experts to take a look outside the box. 

        • There are many clinical studies available throughout the world that validate CCSVI  … do your research!

          • Spoken like a true believer!

          • I do believe because I know that my quality of life now is superior to anything I’ve experienced from 14 years of disease modifying drugs, changes to diet and true belief in all of these.  Let go of your skepticism and try fighting with us to allow proper clinical studies in Canada! 

        • Then we can dispute ALL drugs for MS as well!

          Counting lesions is meaningless… lesion load does not corelate to disability progression.  The oft cited 30% improvement on DMD therapies is well within the placebo effect ranges as well.

      • show the money as the saying goes….where’s your neurologist or physician
        or therapist report to back your statements, MRI’s, independent validation
        from a scientist of reduced EDSS, electrograms of muscles, less plaques,
        less atrophy, lay it out please for everyone, before and after because it’s
        not science based otherwise and just hot air? by the way do you work
        for the medical tourism groups and I personally would like disclosure of
        the hundreds of thousands of dollars made by each doctor, business
        that have taken part in this mass experiment, especially if they
        are attending events such as put on by the National CCSVI group foundation
        in Canada. Full disclosure is being demanded of every MS society personnel,
        researchers in UK, pharmaceutical companies and I would like to have
        all the cards on the table equally.

        • My neuro is working with me doing dye MRI’s to track my progress!  it is REAL! 

          • Uh, before you get that MRI, please be sure there was no metal stent left behind when you got liberated.  If there’s metal in you, you must quickly find out what the “M” stands for in “MRI.”  Before you enter the MRI suite.  Otherwise, there may be unpleasant liberation of an altogether different nature…

          • Stents are not made of an magnetic material. They will cause no issues during an MRI.

          • Your arrogance seems only to be outshone by your ignorance.   I do not have stents..  MRI can be performed on people with stents – they ask the question on the intake form so as to set up the machine appropriately.   People need to remove themselves from a place of anger, fear & hate and let others who find benefit be cared for with simple angioplasty in their own country!  Do your research

          • Mr. (or Mrs.) T: Your appreciation for my concern over your safety is eclipsed by… well, by just about any speck of dust.  I hope you will soon free yourself from your place of anger, fear and hate.  Good luck.

            dan: I suggest you google “liberation therapy metal stent” and you may learn something about what is going on out there.  Cheers.

        • Wow!  Who do you work for???  This is a disagreement between specialties – in Canada it is the neurologist and the vascular specialists – sadly the patients have landed in the middle. 
          You guys are trying to discount the validity of patient testimonials.  If you can’t show a difference on radiography, it is not real.

    • can you really say that given the hugh repeat crowd at every event seeking 2nd and 3rd
      procedures, I even know one woman had 4 treatments no help,
      you must not be meeting folks that have had the procedure, this
      is not a joke, 4 people have died, be honest and let the chips
      fall where they will

      • CCSVi is not the answer for everyone, but the fight to prevent treatment is futile!  Our lives are at stake and we will get them back at any cost!

  4. Difficult question to face. 

    People should be allowed to experiment with treatments in these kinds of difficult medical cases but at same time we have to protect society from snake oil salesmen. 

    I don’t know enough about Dr Zamboni to know if he’s actually trying to help or is he con artist looking for attention/fame. 

    I was just reading article about stem cells. Another dubious placebo or new therapy? 

    Daily Telegraph, Aug 25 2011:

    Joost van der Westhuizen, the South African rugby player recently diagnosed with fatal motor neurone disease, is undergoing experimental stem cell therapy in a bid to slow its progress ….
    The procedure is said to have produced “encouraging” results elsewhere in the world and involved the removal of fat from the stomach using the same method as liposuction ….

    Mr van der Westhuizen’s neurologist, Dr Jody Pearl, said they were “cautiously optimistic” that the stem cell experiment might buy him more time. She said there was no harm in attempting the treatment since the use of Mr Van der Westhuizen’s own stem cells meant there was no chance of his body rejecting them.

  5. This is a conundrum for sure.  I had it done.  Blind faith?  Absolutely.  When you just keep right on progressing despite interferons and the biggie Tysabri, you will try drinking gasoline if someone has good results.  Many on here act like that’s crazy, and to some degree it is, but you simply don’t have a frame of reference (unless you have MS where you still aren’t working full time and jogging after dinner like many who comment) to understand the dynamic of having an incurable progressive disease.  Why do you think we had the bee sting craze and all that. 

    I knew I was going into uncharted waters to be sure and I also knew there were risks.  Did it help me?  To a point I firmly believe, but have no empirical evidence whatsoever.  So I stay detached from getting into arguments since there is simply no empirical evidence since I will get trashed in an argument.  That’s why I don’t argue about it.  I did it and will do the next thing that comes along if it makes a modicum of sense.  I was in a stem cell therapy trial also that did absolutely nothing.  When you live 24/7 with something that gets constantly worse and for which there is no viable alternative (read above: I did the drugs and they didn’t work as is all too often the case) you will try things that you don’t have the time to wait around for the proof.  It’s pretty much what you see going on.  However, the people who defend it like a cult also need a relality check. 

  6. I am evidence!  Can placebo suddenly give you balance so you don’t have to hang on to anything when you stand up?  Can it make you able to walk and even carry a cup of tea without spilling it when you haven’t been able to walk without a mobility aid for more than 17 years?  Can it completely eliminate headaches with pain behind the left eye that were occurring on a weekly basis?  Can it take away heat intolerance that made it impossible to have anything warmer than a lukewarm shower  and now let you soak in a hot tub?  If my improvements are placebo then I say “bring on the witch doctors” because they do a much better job at improving quality of life than my neurologist ever did for me in 21 years!  My family doctor has witnessed my improvements and is disgusted that Canadians with MS are forced to leave their country for a safe, simple procedure that others who haven’t been cursed with the diagnosis of MS can have.

    I have it in writing that venous angioplasty of the jugular veins is approved by the BC Ministry of Health for people with chronic renal conditions but not for people with MS–sounds discriminatory to me.  It’s not a treatment for MS!  It’s a treatment for poor blood flow from the brain!

    Speaking of more evidence, please see Venous Angioplasty in Patients with Multiple Sclerosis: Results of a Pilot Study  No drugs ever showed decreased lesions!

    • Actually, it could very well be the placebo effect. All the symptoms you mention will definitely be helped by the placebo effect. So how do you know what is placebo and what is due to the treatment? Don’t knock the placebo effect until you have done some research on it…

      • I know enough about placebo to know that I couldn’t care less if the improvements I’ve had are placebo or not.  I have had a better quality of life in the past 5 months than in the 21 years since I was diagnosed with MS.  I also know that nothing else has been available to improve me and I deserve the chance to try it.  Other people can have venous angioplasties and it is discriminatory to forbid people with MS to have it.  Are you aware that MS is misdiagnosed very frequently and that the symptoms that improved for me are also vascular in nature?  I wanted treatment for my vascular symptoms–not the ones mistakenly attributed to MS–and I got it!

      • Bob, you seem to be a placebo expert. How can I subscribe to your miracle placebo newsletter and buy your miraculous placebo products?

        • I’m just an expert in uncovering quackery.

          • Bob, why would it matter if your contention is true that these people’s improvements have all been due to a “placebo effect”.   That just means that following the procedure their brains reacted in a way to provide them with the relief they were expecting the procedure to provide.  Either way, the outcome is the same for them….they got symptom relief and it has continued.

          • It matters a lot. If the treatment itself has no effect then it is just snake oil or quackery. We may as well just go back to using witchdoctors. Certainly lets use psychological treatments when they can help people, but we shouldn’t deceive people by telling them a treatment works when it does not.

            We don’t know for sure if liberation therapy is effective or just placebo, but there isn’t really much evidence supporting it at the moment. Patients should wait until there is evidence from a clinical trial before undergoing a potentially dangerous therapy.

          • Sorry Bob, I have to reply to you here because your last comment me does not have a reply button. 
            You yourself have decided that anyone who says they have been helped by the therapy is wrong, that they are experiencing a “placebo effect.”  Therefore, you have already decided in your own mind that no one can obtain symptom relief by receiving this therapy.  Now you admit you are not sure it is a placebo effect and we cannot know that unless a double-blind trial is done – yet meanwhile you have dismissed all these people’s experiences as “meaningless”.
            Further, you are concerned about the fatalities they have been caused by the therapy but surely know that other therapies used to treat this disease have also caused fatalities.
            I am sure those who have been helped by the therapy just want validation that they are being heard; those who think they might be helped by the therapy want to know that they will have an opportunity to be assessed and that bickering between specialists get in the way of them possibly living a life with fewer symptoms.

          • Not sure why you couldn’t reply…disqus can be a bit flaky at times. To answer your question: I have not said that this treatment must be entirely placebo – I have said that it MIGHT be. There is a difference.

            Nobody is saying that we shouldn’t look at new treatments. But we should be aware of the risks and look at the evidence rather than simply using emotion. The benefit of any treatment needs to be weighed against negative effects. So far we don’t have any definitive evidence of benefit from this treatment, but we do have definite evidence of deaths resulting from it.

          • Again your comment has no reply button….
            You say there is “no definitive evidence of benefit with this therapy” however,  the only way to measure benefit in the case of symptom relief is to believe the patient’s testimonial evidence that there has been improvement in symptoms.   It is not like patient testimonial is not a valid measure in scientific studies.  Think of pain studies….they reply almost exclusively on patient testimonials.  Also, when you measure the experience of nausea.
            If you tell the patients that their experiences are meaningless, what will you measure?

          • No, the only way to measure benefit is through a double-blind placebo-controlled trial.  That is well recognised in medical research. And it is not that we are ‘not believing’ the patient, as you say. The patients are not lying. It is just that we do not know the reason for the benefit – whether it is a specific result of the treatment, or because of the placebo effect. Either way the patient is not lying.

            Pain studies are a good example…it is well known that the placebo effect plays a large role in pain relief, so relying purely on patient testimonials would be pretty pointless. The same goes for nausea, where the placebo effect also plays a very large role.

          • Again, no reply button.  For your sake, Bob.  I hope you never get sick and someone refuses you medicine because they BELIEVE it likely has no benefit beyond a “placebo effect”.

          • I think disqus just doesn’t display a reply button when the comments reach a maximum indent level.

            It’s not a question of belief – it is based on evidence. Either there is evidence that a treatment works, or there is not. If there is no evidence that it works then the treatment should not be used (except in a trial). That is what ‘evidence based medicine’ is all about.

            And I have actually recovered from a chronic illness due to the placebo effect, which is how I know a little about the subject.

          • So, you were in a double-blind study, received a sugar pill & got well?

          • No, not quite. I had a stress-related illness and recovered by changing my lifestyle. I don’t want to go into too many details in a public forum, suffice to say that the psychological effect of what I did to recover was identical to the placebo effect.

          • I wonder if some of the independent journalists and posters are just shills for big pharma and will do anything to discredit progress if it takes away big bucks from the drug industry. The side effects of MS drugs are horrific. I know first hand. The side effects of CCSVI pale by comparison. Give your heads a shake!!

    • yes campath does and helps reverse some atrophy in brain in some cases,
      not developed by the EAE model, just like the interferons were not developed
      on EAE model as many have blatantly reported falsely. Exercise works marvellously
      as well, as does aspirin and many anticoagulants/anti-inflammatories/corticosteroids

      • Campath is still experimental and, as usual, only being tested on relapsing/remitting cases.  Why aren’t some drugs looked at for progressive cases?  Oh, yeah, because there’s no chance of improvement so it won’t look like the drug “might” be doing something even though remission is normal at that stage of the disease!

  7. I just have to add:  neurologists study brains, NOT veins!  Who was involved with the negative studies?  Neurologists.  They obviously don’t know anything about veins as admitted by Katherine Knox, a neurologist and the director of Saskatoon’s MS Clinic and the Cameco MS Research Neuroscience Research Centre, responsible for the joint study with UBC that will look at how to best define and test for CCSVI “we do not know how to accurately and reliably define venous abnormalities that may or may not be related to MS”–maybe they should leave vein research to the vein experts. 

    • Stroke doctors work on the vascular everyday and of course IR’s.

      This is all new territory for everyone, why bully all doctors?.. by doing so it seems
      mean spirited and counterproductive.  Neurologists work in many specialized areas
      of medicine. If this is the real deal the results will speak for themselves. I want
      strong evidence of efficacy long-term and safety.

      • I guess I should have specified–all the neurologists who specialize in MS and have closed minds.

      • Agreed 100%. Though, for the past 2+ years it seems to have been the neurologists who’ve been doing the bullying trying to trash-talk the theory into submission instead of allowing the studies and results to speak for themselves. This is why everyone is up in arms about it and the patient movement will not die easily. The only reason why studies are finally underway now is more or less because of patient persistance.

  8. I’m evidence of the relapsing nature of RRMS. Before anyone every heard of CCSVI, I was bedridden and paralysed by a severe exacerbation. Now, I’m fully ambulatory without the need of a walker or a cane. I can dance, run and play my guitar. My MRIs show no new lesions or activity and have not experienced another relapse since that severe one.

    That said, I have nothing against individuals seeking out experimental treatments on their own. People are entitled to do whatever they want to themselves so long as they understand that they must also accept and bear the negative consequences of their actions. What I’m totally against is promoting unproven treatments to others via social media like Facebook. I find it disturbing that there are pwMS who are placing more trust on a failed opera singer and a geologist, none of whom have medical backgrounds but like to play doctor on Facebook, rather than actual medical professionals. I am also troubled by their crusade against any medical professional that dares disagree with their beloved theory and their boycotts against MS societies. I want research funds to go directly to treating MS, not some other condition that the aforementioned studies have not found in all pwMS and even found in people without MS. Some people with MS also suffer from various cancers and type 2 diabetes. Does that mean that MS Societies should also give their research funds to Cancer and Diabetes Societies? The liberation movement is very much like the anti-vaccination movement. Zamboni may share a similar fate to the one that befell Andrew Wakefield.

    • I’m very happy that you, so far, have only had one attack and I hope you have no more.  I remember after being diagnosed in 1990 after a few bouts of “weird” symptoms that I thought my troubles were all over because I was going to be one of the lucky ones with no real problems.  Then I had a major exacerbation that left me unable to move so I spent a week in the hospital on intravenous steroids.  That seemed to clear things up and I got back to my normal, active life for about 6 months.  Then another major attack that caused mobility problems and double-vision.  That stay in the hospital didn’t seem to help much.  They sent me home still unable to walk properly (which never recovered) and double- vision which lasted for 10 months.  I had to stop working and life sucked.  A few more attacks and then I “plateaued” with lingering symptoms.  This led to a change in my diagnosis from RR to SP so even when some pharmaceutical treatments were approved I didn’t qualify.

      I want people diagnosed with MS to be treated equally with other Canadians who are entitled to get other opinions on what may be causing their symptoms that may have been mistakenly attributed to MS.  People with the label of MS are forbidden to get looked at by vascular specialists in Canada even though many of the symptoms are the same as vascular ones.  I don’t particularly care if any “research” money is spent by the MSSC–I just want the Society that is supposed to care about people with MS to stop putting up roadblocks so they can’t be tested/treated for a vascular condition.
      You didn’t mention how long it’s been since you were diagnosed but I suspect that if you had to live with the amount of disability that I have for as long as I have you might be a bit more compassionate.  By the way, I had venous angioplasty 5 months ago and can now walk, unassisted, for the first time in over 17 years so I consider this a “proven” treatment for my vascular condition of CCSVI.  Several other symptoms that my neurologist said were related to MS cleared up too.

  9. Analysis of 5 case reports is a very, very small study compared to the number of treatments that have been done.  Treatment of CCSVI, which has now been classified as a congenital disease, with venous angioplasty is not a cure for MS.  There is no cure for MS.  Compared to the alternatives, the treatment is safer, more effective and cheaper.

    • It’s not a study. It’s a “Analysis of 5 case reports”, as you said. Mdj.

  10. I like you, Ama Marya!

    Best regards, Mladen.

  11. I am so sick of this argument..most of the 13,900 folks who have had the treatment have not suffered dire consequences.  Those that did, I’m guessing had stents (big no-no), or went to a clinic that didn’t know what they were doing.  There is a huge learning curve for this.  Anyway, I don’t really care.
    I did have the procedure, have had PPMS for 23 yrs, I have a straght back because some of the spasticity let go.  My legs don’t kick out eveytime someone touches me, I don’t have my bellybutton facing out my right side, my internal organs are no doubt happier.  Miracle?  No…but improved quality of life?  Less pain?  Less anti-spasm meds?  Yep-I’ll take it.

    • There are 5 death persones after this unnecessary treatment. They suffered unmeasurable dire consequences. Huge learning curve indeed. Mdj.

      P.S. “…have had PMS for 23 years” …so what? …you are not alone, most womens have it!

      • Mladen..I have no clue what you are talking about…most women have Primary Progressive MS? Really?  What planet do you live on?  5 deaths out of 13000 persons is scientifically insignificant.  But whatever, I choose my life, you choose yours…

      • There are dozens of people who have died taking Tysabri and hundreds who have developed PML, which may well progress to death.  Yet this is within the acceptable risk range for pharmaceuticals.

        Why do you hold angioplasty to a different standard?

      • How do you know this Mladen Đokić … that  ”They suffered unmeasurable dire consequences”?I DO NOT BELIEVE ONE WORD MS NEUROLOGISTS SAY AND I WANT PROOF WHICH THEY ARE AFRAID TO SHOW OTHER THAN THEIR NEURO FRIENDS. You get that information from the first link Colby supplied. “”The Canadian Journal of Neurological Sciences Issue: Volume 38, Number 5 / September 2011 Pages: 667 – 668”” GOOD LUCK! The only ones who see this junk science are the neuros that have fabricated it.  PROVE IT … let us all see their findings and if NOT … they are NOT CREDIBLE. JUST SHOW THEIR FINDINGS AND PROVE THAT CCSVI IS A HOAX. PROVE IT … let us all see their findings and if NOT … they are NOT CREDIBLE. JUST SHOW THEIR FINDINGS AND PROVE THAT CCSVI IS A HOAX.

    • I’d spell it out more for those who like to ignore links:

      “…A new University of Calgary study documenting complications in patients who have undergone treatment for CCSVI amounts to little more than fear-mongering. The researchers looked at potential complications in five patients who were treated with angioplasty in Eastern Europe. However, they appear to have no information about the circumstances of the actual procedures. Were the people doing the surgery well trained? We have no idea. We don’t know what they did, or what happened during the procedure.
       
      It’s estimated that more than 12,000 people have been treated for CCSVI worldwide. There has been no data collection on either outcomes or complications, so to focus on complications for five patients is fear-mongering.
       
      No surgery is without risk. But it is irresponsible to attribute complications to a procedure when we don’t have complete information. For example, the University of Calgary researchers make the assumption that a stent has migrated in one patient, but there is no proof of where the stent was originally placed.
       
      What the Calgary researchers did was to look at five people. What they didn’t do was to conduct a trial that investigates the safety of angioplasty. In fact, such a trial has already been done, by interventional radiologists at the Albany Medical Center in Albany, NY. Their study, released in March 2011, followed 231 patients. “Our results show that such treatment is safe when performed in the hospital or on an outpatient basis — with 97 percent treated without incident,” said Kenneth Mandato, who led the research.
       
      People with CCSVI who choose to be surgically treated should have access to well-trained, experienced doctors and full information about the potential risks and benefits of the procedure. Randomized, controlled double-blind studies need to be done to assess the efficacy and potential risks of this treatment…”

  12. Placebo Surgery Surprise: Fake Procedures Are As Good As “Real” Surgery
    “…Placebo surgery shows surprising results! In fact, in those studies where placebo surgery has been used, many patients receiving the placebo improved.

    The study of treatments for angina pectoris (unspecified chest pain) has been particularly revealing.

    In the 1950s, many physicians treated angina with ligation of the internal mammary artery. Despite claims of up to a 91% success rate, in the late 1950s, two skeptics conducted separate double-blind tests in which half the patients received skin incision, but not artery ligation. In both studies, the placebo surgery proved equally effective as the ligation. And the overall rate of improvement with the placebo was 37%.

    A 2002 study of arthroscopic knee surgery found that the outcomes for a placebo procedure were as good as those of the “real” surgery.

    The bigger and more dramatic the patient perceives the intervention to be, the bigger the placebo effect. Big pills have more than small pills, injections have more than pills and surgery has the most of all…”

    http://www.mindpowernews.com/PowerOfPlacebo.htm

    • As I said earlier, the brain is an amazing organ….does it really matter if the brain registers improvement because it expects it v. there really being improvement.  Either way, the symptoms improve and the patient’s quality of life is improved.

  13. “I’ve always been immensely proud of our health-care system
    – one that was once considered to be one of the best in the world,  But times have changed and Canada now ranks
    below Slovenia in terms of effectiveness and last or second last in terms of
    value for money.” – Dr. Turnbull, the outgoing president of the Canadian
    Medical Association, in his valedictory address to CMA delegates August 23,
    2011.

    Canada is way behind the research curve on this one.  Canada is still talking about a small phase I/II study and probably another 5 years before the clinical trials get underway.  The safety study on venous angioplasty for CCSVI has already been done and published as of March 2011, by interventional radiologists at the
    Albany Medical Center in Albany, NY. Their study followed 231 patients. “Our results show that such treatment is
    safe when performed in the hospital or on an outpatient basis — with 97
    percent treated without incident,” said Kenneth Mandato, who led the
    research.  Did the Calgary Neurologists read the research?

  14. It surely can’t be a good thing for major veins to be highly constricted. Whether this is related to MS or not, maybe correcting it has beneficial results for some people. I’m no medical expert, but better blood flow to and from the brain might help motor skills, etc.

  15. the positives outway all the negatives CCSVI is a positive way forward

  16. I very angry with these reports that ALWAYS side with NEUROLOGISTS. They have NO right to discuss, report and criticise anything to do with CCSVI. Sure they can say whatever they want. And sure they can publish whatever they want BUT it doesn’t make it so.
     
    ONCE again this is not their expertise and they have instructed the College of Physicians and Surgeons to strong arm all those who want to treat CCSVI they will lose their credentials if they do so. PLEASE Colby Cosh check these things … you have better clout than any of us who are trying our best to show the TRUTH.Colby Cosh check these things … you have better clout than any of us who are trying our best to show the TRUTH. I DO NOT BELIEVE ONE WORD MS NEUROLOGISTS SAY AND I WANT PROOF WHICH THEY ARE AFRAID TO SHOW OTHER THAN THEIR NEURO FRIENDS. You get that information from the first link you supplied. “”The Canadian Journal of Neurological Sciences Issue: Volume 38, Number 5 / September 2011 Pages: 667 – 668”” GOOD LUCK! The only ones who see this junk science are the neuros that have fabricated it.  PROVE IT … let us all see their findings and if NOT … they are NOT CREDIBLE. JUST SHOW THEIR FINDINGS AND PROVE THAT CCSVI IS A HOAX.I DO NOT BELIEVE ONE WORD MS NEUROLOGISTS SAY AND I WANT PROOF WHICH THEY ARE AFRAID TO SHOW OTHER THAN THEIR NEURO FRIENDS. You get that information from the first link you supplied. “”The Canadian Journal of Neurological Sciences Issue: Volume 38, Number 5 / September 2011 Pages: 667 – 668”” GOOD LUCK! The only ones who see this junk science are the neuros that have fabricated it.  PROVE IT … let us all see their findings and if NOT … they are NOT CREDIBLE. JUST SHOW THEIR FINDINGS AND PROVE THAT CCSVI IS A HOAX.

    • Yes, sadly, you are right – CCSVI and “Liberation Therapy” IS a hoax.

  17. Holly Shean, August 2009, Liberated by dr. Dake team, Stanford.
    Mahir Mostic, October 2010, Liberated by Dr Marcial Fallas CCSVI team, Costa Rica.
    Margo Larayne Oliver, March 2011, Liberated by Dr Marcial Fallas CCSVI team, Costa Rica.
    Maralyn Clarke, March 2011, Liberated in Newport Beach, CA…

    …and still counting…

    All that for unnecessary, unethical, needless, worthless, greedy for money, treatment.

    Venous backflow alias “Reflux in the brain” is a Bogeyman of CCSVI theory, monstrous imaginary figure used for threatening MS-patients. This legendary monster has no specific appearance, no evidence of existing, non explainable by any hemodynamic theory. He simply has no set appearance, but is just an amorphous embodiment of terror. Just endless repeating …. If you are not Liberated, the bogeyman will get you and eat your brain!

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