Liberation Therapy – Four Years On

May 05, 2013 3 Comments by

There is no doubt there has been intense world-wide focus on Dr. Paolo Zamboni’s hypothesis since his study in 2009 suggested “clinical improvement” in MS patients with narrowing of the cervical veins, otherwise known as CCSVI. The hope of the neck vein-widening “liberation therapy” was that full drainage of the central nervous system would be a single strategy to cure MS, or at least halt progression of the disease. With drug interventions available that merely mediate symptoms, and with so much to lose over time, thousands of MS sufferers have travelled far and wide to have this procedure as a potential therapeutic approach for MS management. Even though there was early symptomatic relief in most cases, many of these patients have not experienced long-term benefits after surgery. Almost inevitably, restenosis of the neck veins occurs at some point after the venoplasty, and patients may (justifiably) worry that evidence-based trials aren’t going to support their early intuition that expanding narrowed jugular veins is effective. MS sufferers and patient promoters who were hopeful of a new-found control over their disease, now lose hope with each new patient report of therapeutic failure over time.

It’s certainly too early to say whether this therapy has been helpful at all, but the results don’t look encouraging. Based on current trial interpretations and many anecdotal testimonies from patients, it is clear that whether or not CCSVI exists as a pathologic entity, efficacy of treatment cannot be substantiated even if there is an association between CCSVI and MS. That has not stopped patients from seeking this therapy. Each MS patient who has had CCSVI liberation therapy has spent a lot of personal money outside of insurance plan coverage, sometimes having the procedure done more than once. About 60-70,000 patients have paid hundreds of millions of dollars to get this done—not counting the costs of airfare and accommodations, as the therapy has only been available in far-flung locations. Many patients and a few persistent practitioners have a lot invested in the theory being correct and, in such circumstances, views become biased and objectives obscured.

What has happened over the past four years, and is still happening, is that some patients and patient-advocates who are active on social media sites are distorting the picture of the efficacy of the liberation therapy as a single MS management strategy. In continuing to promote the therapy, backers are simply picking out the few examples that have demonstrated success as so-called ‘evidence’. But, in science, the entire body of evidence must be represented and respected. Supporters of CCSVI liberation therapy have a theory that MS can be cured by simple neck vein expansion. But the theory weakens, with failure after failure that has shattered early optimism. So at some point, it’s important to look at all of the evidence and re-think the strategy because the theory has been challenged, and you can’t just discard some of the evidence and explain it away. Medical science is a process of continuous testing, and the outcome is not always going to be positive, especially when there’s already so much at stake. The promoters of the hypothesis as it is currently understood—as well as the practitioners—must soon admit that their interpretations and methods are flawed.

To those who maintain fixed beliefs and who continue to promote CCSVI liberation therapy as a single intervention strategy, we must ask this: Are you open to examining all of the evidence, or will you continue to focus only on patients and information that supports your own point of view?

Some of us are saying, “Let’s look again at this treatment in context and see how we can avoid making the mistakes we made in rushing to get this done.” There are lessons to be learned from what has happened, and the new debate should be about what really makes this therapy more effective and long lasting, because we can clearly see that there is a connection between the vascular pathology and the disease. Many symptoms of MS do go away as long as the veins remain fully open.

With something as new as CCSVI liberation therapy, I think it’s wise to re-examine the hypothesis and ask ourselves if we’ve understood it properly: have we got it right? Through clinical trials and other types of medical research, we will always be getting new information, shifting perspectives, and discovering new data that helps us put other pieces of the puzzle together. This is true of all medical science. What happened in the past helps us understand the way forward in the future. The more we think we know, the more helpful it is to realize what we don’t know. While we believe we are on the right track with free flowing drainage of the central nervous system, perhaps the solution to a permanent cure for MS is more complex than popping a balloon in a weakened vein and hoping for the best.


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3 Responses to “Liberation Therapy – Four Years On”

  1. Michele Findlay says:

    Doug, there may well be people out there that have fixed beliefs but there must be as many if not more who continue to learn and revise their understanding all the time. CCSVI treatment may not be efficacious for all that have been treated and undoubtedly there have been some negative results from the small studies that have taken place. But there have also been some positive results from research, and for a significant number of patients. Consider also that those negative results have come from studies carried out by researchers in the field of neurology, and in one study in Italy (COSCA) the researchers blatantly manipulated the results to make it appear negative.

    There has been a lot of learning and any number of new avenues of research centred around the circulation in the brain, some of it appears significant in that one cannot argue with numbers: ie circulation is slower in people with MS. So if nothing else the CCSVI theory has opened up a new way of thinking of MS not as an autoimmune disease but as neurological problems caused by unusual vascular system in the brain

    It is indeed sad that people have had to spend their own money to get a treatment that is neither dangerous or expensive to carry out. And if our health systems had not been so set against it, we might have found out why it works for some and not for others by now.

    It is quite obvious that when dealing with such a sophisticated organ as the brain that the problems causing disability might be many, varied and complex. No one that I know ever suggested that it would be simple to solve, not even Zamboni himself. It could well be that CCSVI is a symptom of something else happening in the brain or even of a condition such as connective tissue syndrome. And it is probable that CCSVI (or its possible cause) is just one of a number of factors making some people more susceptible than others.

    But I have not regrets about paying for my daughter’s treatment; we have learnt such a lot and it has led us directly to something which is actually making a gradual improving difference to her: temporomandibular dysfunction treatment… And thereby hangs another tale.

  2. Lori Batchelor says:

    I’m open to as much research as possible–I just wish the Canadian government and MS Society of Canada were more proactive in searching for treatments that aren’t just pharmaceutically-based! Sure, they try to pacify with promises of clinical trials for CCSVI, but we’re STILL waiting!

  3. Nicole Bedient says:

    This article makes more sense than anything I’ve ever read on CCSVI. It’s about time someone started telling it like it is. How many people have to restenose before it becomes risky for patients? It’s time to step back and take a look at what we’re all doing. The radiologists seem to be having a field day but is anyone getting better really? For everyone that gets better how many restenose?

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