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CCSVI Treatment: It Isn’t New and It Isn’t a Cure

“Italian Doctor Discovers New Breakthrough Cure for MS.”

This title appeared in our newsfeed sometime in April 2016 and MS patients have been posting the link to conversation threads across MS online forums ever since. If you haven’t already been enlightened, the straight dope on this item is that indeed it is neither a new discovery nor a cure for MS.

It is Chronic Cerebrospinal Venous Insufficiency, commonly known as CCSVI, and it first hit the medical news outlets way back in 2009. Here are highlights of the primary study results, subsequent studies and treatments done up until the present.

Dr. Paolo Zamboni conducted a small study of 65 patients who had both MS and the condition of restricted neck veins known as CCSVI. By performing an angioplasty and opening these subjects’ veins, Dr. Zamboni’s findings concluded that this procedure relieved their MS symptoms. His hypothesis was that the vascular stricture impedes proper blood flow out of the brain, leaving behind iron deposits that cause MS-like lesions to form and nerve damage to occur, thereby causing the patient to become symptomatic of multiple sclerosis.

Despite the powerful image of a geological formation of iron deposits being the missing link in the mysterious development of neurological disease, it would be wrong to assume that Zamboni earned the title of Iron Man years before Robert Downey, Jr. made the franchise famous. Studies were performed elsewhere in the world, and some showed a connection between abnormal veins and MS while others did not. As dramatic as the results were in Zamboni’s pilot study, the largest and most thorough double-blind randomized controlled studies have been performed in Canada and the U.S. and produced mixed results. Zamboni’s theory that MS has its roots in vascular disease has been debunked for the time being.

The flaw in Zamboni’s hypothesis might be proven partly by the fact that so little has been mentioned about it during the past seven years and people forgot, thus thinking the latest headline was about something new. Still, it would be imprudent to ignore the numbers of MS patients who had the angioplasty and benefitted from it, some needing to repeat the procedure at least once after their MS symptoms returned. I personally know two people with MS who had the procedure done twice and temporarily benefitted from it, still feeling to this day that it was not a waste of time and money despite paying out five figures to travel a great distance with no guarantees and no insurance coverage. But there is an even more eloquent reason to abandon the vascular theory. Let’s look at what’s been in the news over the past few years.

Stem cell therapy has been studied for quite some time. The hypothesis asserts that clearing and then rebooting the immune system can halt the disease and even repair damaged myelin. This approach embraces the conventional autoimmune theory that multiple sclerosis occurs as a result of a faulty immune response. According to neurologist consultant Michael Hutchinson, M.D., it’s been met with much less skepticism in the medical establishment than the vascular theory because the most effective treatments for MS are the drugs that modulate the immune system and reduce the number of relapses and new lesions.

People with MS have done much to pressure the medical research community to explore alternative therapies that go off the beaten path of immunomodulation. Researchers have done just that to prove or disprove what many in the field would consider studies with weak hypotheses that are not worth the time and money to pursue. In an ideal kind of economy where there is an unlimited supply of research dollars, there would be no concern about such waste.

People with MS are also well aware that they have an expiration date besides the day they’ll croak and have to give up all hope. It is the day that one’s quality of life turns a corner in very personal ways, ways that prompt them to put their faith in anecdote and try remedies based on the weakest of theories. In response, medical research is transforming itself from being an arcane old boys’ network to a kind of catcher in the rye, the watchman that tries hard to save we sufferers from straying too close to danger.1-5

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

  1. Kim LaCapria. “A Cure for What Fails You: Long-debunked claims from 2009 about a novel approach to Multiple Sclerosis were misleadingly presented as news in 2016,” Snopes, April 27, 2016. A Cure for What Fails You
  2. Hutchinson, Michael. "Funding CCSVI Research Is/Was A Waste Of Valuable Time, Money And Intellectual Energy: Commentary," Multiple Sclerosis Journal. June 2013.
  3. Traboulsee, Anthony L. et al. "Prevalence Of Extracranial Venous Narrowing On Catheter Venography In People With Multiple Sclerosis, Their Siblings, And Unrelated Healthy Controls: A Blinded, Case-Control Study," The Lancet. 09 October 2013.
  4. Tullis, Paul. "A Controversial ‘Cure’ For M.S." New York Times Magazine. 26 October 2012.
  5. CBCnews Health. "Zamboni MS Vein Theory Debunked By Study," 8 October 2013.

Comments

  • Laurie
    3 years ago

    Thank you so much for this! I have been getting this story from well – intentioned friends and it’s been driving me nuts, because once I read the story, I knew this was neither new nor a cure.

  • Matt Allen G
    3 years ago

    It’s was bugging me because I was getting all these emails/messages about “this new treatment a doctor in Italy came up with” – I was not sure what they were talking about. “Oh CCSVI! Yeah that is super olds news” and honestly I think it is a load of crap… Everyone I have ever heard of or talked to who had CCSVI done experienced the effects wear off. If you ask me, it’s a really expensive means of temporary relief like a cold shower haha… Montel Williams did it a while ago and even he said it was great at first but after a while “wore off”

  • Matt Allen G
    3 years ago

    And I mean a load of crap regarding it being “the cause and cure of MS”

  • Cathy Chester moderator
    3 years ago

    Excellent, Kim. We all need to do our homework and not put too much trust in the media’s hype about the next best cure.

    As a contributor to The Huffington Post about MS and disability I submitted a post about an interview I conducted with a composer (House of Cards, Monk, etc) who had CCSVI done with great benefit. It was the only post I submitted the Post that was denied! (Sure, the Kardashians get published…) Too controversial? No backing? Whatever the reason they wouldn’t publish it. I was upset because in all fairness we need to read all sides of a medication/treatment and make informed choices.

    Anyway, great piece as always. I’m putting my betting money on stem cells.

  • Kim Dolce moderator author
    3 years ago

    Hi Cathy,

    I’m sorry to hear that your CCSVI piece wasn’t accepted. It is a legit vascular condition that isn’t always symptomatic, but can be successfully treated in both symptomatic MS and non-MS patients alike. I think some of the confusion about the condition started once it got attached to multiple sclerosis. Before Zamboni’s study, I doubt many of us had ever heard of CCSVI. Thanks for your comments 🙂

    Kim

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