Tuesday, January 11, 2011

The CCSVI Firestorm

Anyone with MS who's active in any internet community knows CCSVI is a major hot button issue.  There are people strongly for it and just as many strongly against it.  Whichever side of the CCSVI fence you sit on, my hope is that you'll do your homework so that you can make an educated decision on it, not a decision based on media hype.


As I stated in a much earlier post, term CCSVI (Chronic cerebro-spinal venous insufficiency) was coined by Dr. Paolo Zamboni, an Italian vascular surgeon who's wife has Multiple Sclerosis.  His theory was that MS is caused by compromised blood flow in the veins draining the central nervous system.  He further theorized that the malformed blood vessels cause a build up of iron deposits in the brain triggering an autoimmune response, resulting in the degeneration of the myelin sheath protecting the nerves.  He believed if the compromised blood flow could be corrected, then MS could potentially be cured.  Dr. Zamboni tested this theory on his wife, and claimed success.  Upon conducting this new procedure on other MS patients, Dr. Zamboni and colleagues reported that CCSVI existed in 90% of MS patients.  And thus, the firestorm was ignited.

It is widely accepted that Multiple Sclerosis is an autoimmune disease, not a vascular disease triggering an autoimmune response.  This alone resulted in much skepticism from the medical community at large.  However, do to the outcry of MS patients worldwide and intense media pressure, studies began to try to duplicate and validate Dr. Zamboni's findings, and the National Multiple Sclerosis Society even donated 2.4 million dollars towards the research.

No sooner had the studies began, medical tourism groups sprang up everywhere, cashing in on MS patients who are desperate for relief from their symptoms.  Then, preliminary reports came in, but rather than validating the CCSVI theory, they only brought more doubt.

Quoting from The American Association of Neurology, dated October 7th 2010:

"A controversial new theory on the etiopathology of multiple sclerosis (MS), which suggests that reduced blood flow in the azygotic and internal jugular vein — chronic cerebrospinal venous insufficiency (CCSVI) — may be at the root of the disease, has been called into question by two new papers published in the August Annals of Neurology."

To put the rest of the article into layman's terms, two separate studies, one in Germany and the other in Sweden, failed to replicate Dr. Zamboni's results.  The German study included 56 patients with MS and 20 controls (people without MS).  In all but one of the patients and controls, blood flow was found to be normal and no stenosis (clogging of the vein) was found.  Interestingly, the only difference the German study found between the MS patients and the controls was that the MS patients had a higher BVF (blood volume flow) in the upright position.  They theorized this difference in BVF could represent vascular dysregulation, possibly due to the effects of MS on the autonomic nervous system.  However, MS patients having a higher BVF not only failed to validate Dr. Zamboni's theory but contradicted it entirely.  The authors of the study said “If anything, however, higher BVF in patients should suggest a better than normal cerebral venous drainage (at least in an upright position) in MS”  The Swedish study had similar findings.  Using 21 MS patients and 20 controls, they found normal results and no stenosis in any of the patients or the controls.  If the firestorm wasn't already raging, these findings threw gasoline on it.  The pro CCSVI camp came out criticizing the methods used in the studies, and the medical community at large only grew more skeptical.

Then, causing further upset to the CCSVI supporters, Dr. Zamboni himself publicly announced "Surgery is not recommended at this stage", supporting an earlier statement he'd made stating that people should not have the CCSVI procedure done outside of clinical trials and that MS patients who do have it done should not stop using their disease modifying drugs.  He also clearly stated he does not support medical tourism.

Despite all this, reports of deaths as a result of CCSVI in the news, and many patients who've had the CCSVI procedure reporting "restenosis" and a return of their MS symptoms, people still continue to use medical tourism in droves to have this procedure done.  Likewise, the pro CCSVI camp has gotten more vocal than ever, taking over MS message boards in armies and enlisting media support to promote and sell CCSVI.

These are the facts.  Not my opinion, not my or anyone else's theory, but the facts.

As for my own opinion?  I believe there is much money to made in medical tourism and CCSVI and people are cashing in on under-educated MS patients desperate for relief.  I've seen them in droves, using multiple fake identities to spam message boards, targeting the newly diagnosed and the under informed with false promises of "a cure".  I've seen the the tons of homemade YouTube videos showing before and after CCSVI, with MS patients claiming to be greatly improved if not symptom free.  People, it's YouTube.  I could make a homemade video that makes me look like an oompa loompa but it doesn't make that true either.  

I am not saying no one has been helped by CCSVI, I'm sure some are legit and have.  But, I also know a huge number have their symptoms return and even have the procedure repeated, further risking their own lives by weakening the delicate veins in question.  Because this is mostly done "under the table" or via medical tourism, there's little to no recourse when something does go wrong.  Worse, there seems to be little ethics by the doctors performing this procedure when it fattens their wallets.

Quite frankly, I am angry and frustrated.  People howl "We want CCSVI treatment now!".  There are clinical trials underway at this very moment, to either prove or disprove Dr. Zamboni's theory.  Clinical trials take time.  It's a fact.  But, clinical trials exist for our own safety.  Everyone has the right to make their decisions for their health, but I have a serious problem with people "selling" an unproven theory as a legitimate treatment for MS.  In my opinion, it's completely unethical and misleading.  When Dr. Zamboni himself says surgery is not recommended, that the CCSVI procedure should not be done outside of clinical trials, and that he is against medical tourism- what gives these people the right to intentionally 'sell' CCSVI to MS patients anyway?  Do these people claim to know more than Dr. Zamboni?  It's obvious to me, the CCSVI spammers do not have MS patients' best interest at heart but rather their own wallets.  It's very, very sad.

People, I URGE you to do your homework.  Take control of your own health through education.  Be it CCSVI, stem cells, or any other potential treatment for MS you need to know the facts so you can make an educated decision.  Don't rely on others to inform you- inform yourself.  I know none of us want to have this crap disease, myself included.  But hope alone does not turn a theory into fact.  We must act based on logic and facts, not emotions and dreams, no matter how difficult and even disheartening as that may be.

Until next time, be well :)
Mis

6 comments:

  1. MiS I agree wholeheartedly with your comments and the underlying posture which you hold on the actions of MS sufferers and the frenzied activities within the medical tourism industry.

    I believe I have accurately inferred from your comments that the 'facts' associated with Dr Zamboni's personal experiences can be viewed almost as anecdotal rather than hard evidence. As recommended, it would seem only prudent to await the results of much larger and more scientifically rigourous studies before booking flights to the nearest medical facility willing to carry out such a seriously unproven and unrecommended medical procedure.

    Clearly, the misguided individuals who refuse to await empirical and rational motivations are either emotionally distraught with their current condition or are terrified with the prospect of further deterioration of their condition while awaiting study results. We must not cast aspersions on these suffering individuals, but rather, accept their mindset as a natural consequence of MS like fatigue or optic neuritis.

    We should soon begin to hear preliminarily results from the larger studies being effected across the continent. Whilst you have correctly referenced the less than stellar results of the Swedish and German studies, I was very surprised to hear, but I believe to be confirmed and legitimate preliminary results from a Buffalo study which reported that MS patients under study, exhibited CCSVI incidence at twice the rate as that of the control group.

    Given these significant snowfalls experienced of late, may I suggest that MS sufferers including myself, stay frosty until medical institutions and practitioners begin lobbying for the integration of Doctor Zamboni's methodology into medical practice and insurance plans.

    D Conway

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  2. Melissa,
    Fantastic.. So proud of you!!

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  3. "I believe there is much money to made in medical tourism and CCSVI and people are cashing in on under-educated MS patients desperate for relief." your words...

    Question 1.) Do the Drug Companies make less money from people who suffer?

    Question 2.) Do they not run campaigns to peddle their drug solutions to people suffering as well.

    Question 3.)Is it impossible to believe that the treatment of CCSVI might offer symptom relief to people suffering? Not a cure! A possible alternative treatment.

    Question 4.) Since no one at present in any area of medicine has anything other than theories as to what causes MS can we so quickly rule this out as a possible cause?

    I agree with you on this point research, research and research some more..Until a cause is found and cure made available to all who suffer.

    But please remember there are just as many studies available to the masses that cast doubt of health and well being to those taking any of the CRAB medications for MS. Case in point Tysabri, just because a trial has occurred does not mean that a drug and or treatment is deemed safe. It just means that a warning is provided and educated adults get to make an informed choice.

    The freedom to choose, that is a right of any person living in a free country... like your freedom to speak... and mine also...

    The best advice to be given to fellow suffers of this disease is to educate themselves... as with anyone suffering from any disease or illness. Sadly we live in a world where we need to be our own advocates for our own health matters.

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  4. I miss your posts Melissa.

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  5. MiS, I so, so, so agree with you! You've said it right, too many people jumped on this CCSVI wagon and they fell off it right after because their symptoms returned. Sad that so many quacks of "doctors" abuse patient trust and have them under their knives to make a quick buck. They should be prosecuted, and Zamboni first! And people yes, please educated yourself big time before having this procedure done. Time will tell if/when proof will be delivered that in fact, it's just a 2% or whatever surety that the CCSVI procedure will work. I loved reading your blog MiS!
    (I recently started blogging myself about living with MS so please feel free to read, rate and comment on any of my posts! :)

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  6. I am happy to have found this blog. It is just what I needed at this time in my own MS journey. I have been on betaseron for almost 6 years.

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