Friday, July 23, 2010

Separating Fact from Fiction: CCSVI

It's a sad state of affairs when five letters can drive such a wedge into the MS community.  Five letters when combined resulting in everything from great hope to overblown internet hype.  Those five letters are CCSVI, which stands for chronic cerebrospinal venous insufficiency.

I think it's best to start with the basics.  The term CCSVI, and the procedure, are both the result of one man's loving attempt to save his own wife from the ravages of MS.  That man is Dr. Paolo Zamboni.  Dr. Zamboni's procedure is based on his theory that iron builds up in the brain, blocking and damaging these crucial blood vessels. As the vessels rupture, they allow both the iron itself, and immune cells from the bloodstream, to cross the blood-brain barrier into the cerebro-spinal fluid. Once the immune cells have direct access to the immune system, they begin to attack the myelin sheathing of the cerebral nerves, allowing Multiple Sclerosis to develop.  By opening these vessels via angioplasty, he hoped to be able to restore the function that MS has stolen.  

He wasted no time in making his wife his first patient.  A catheter was thread up through blood vessels in the groin area, all the way up to the effected area, and then a small balloon was inflated to clear out the blockage.  Three years after having having this new procedure done, his wife claims to be symptom free.  Thus, the explosion of hype, controversy, and hope dubbed the "Liberation Procedure" was born.

Though the cause of Multiple Sclerosis is unknown, it's widely thought to be an autoimmune disease rather than one of vascular origin.  This alone has caused quite a rift in the MS community, some hailing the Liberation Procedure as a cure, others scoffing at it entirely.  Despite the controversy and lack of medical data to support the CCSVI procedure, thousands of MS patients desperate for help have flown to clinics in Poland, Bulgaria, Mexico, and India to have this procedure done.  As a result, the internet has exploded with YouTube videos of MS patients being cured and others claiming it was a complete failure.

What's my opinion on all this?  My spirit wants to jump for joy in hope that maybe my days suffering from MS could be nearing an end.  But, I am logical minded by nature, and despite my overwhelming desire to be free from this horrible disease I can't ignore the facts before me.  Thus, I'd have to say my opinion is one of great skepticism mixed with hope.  I do not believe CCSVI treatment is a cure for MS, as many do not.  Even Dr. Zamboni has said repeatedly MS patients should not stop their disease modifying drugs after the 'Liberation Treatment'.  I do however hope that in time it'll be proven to be an effective treatment to alleviate many of the awful symptoms MS produces.

It saddens me greatly to see so many with MS basing their own opinions on CCSVI based strictly on internet hype.  I have read post after after post on the Facebook NMSS board of people claiming CCSVI is a cure, to throw away your meds and be 'Liberated', and raging tirades that the US and Canada currently don't recognize the CCSVI procedure as a treatment for MS.  There's good reason this procedure isn't currently recognized as a treatment.

Currently, there have been no scientific studies done to determine the effectiveness, long term risks and benefits, or even safety of treating CCSVI.  In fact, the first ever clinical trial on CCSVI is currently underway in Buffalo, NY.  Until some more scientific testing is done, especially using blind and double blind studies, you can not expect the medical community to embrace CCSVI.  There are far too many unknonws.  

Already some serious questions and risks have arisen.  First, the angioplasty technique used in treating CCSVI was actually created for heart patients.  The vessels being opened in CCSVI are much smaller, thinner, and more delicate than those in the heart.  Already some deaths have been reported due to rupture. Some doctors already performing this procedure have even go so far as to use stents (also made for heart patients) to hold the vessels open, greatly increasing the risk of rupture even further.   Secondly, it's not even known at this point if what has been dubbed CCSVI isn't a normal condition of aging found in all people, so that needs to be determined as well.  Third, a great many in the medical community question the longevity of opening these vessels, speculating it's likely a procedure that would have to repeated numerous times throughout the MS patient's life.  Will it last a month?  A year?  A decade?  No one knows for sure, or even if it's safe to put that repeated stress on the vessels by constantly performing angioplasty on them.  In short, as of right now, the unknowns simply outweigh the knowns, and a lot more testing and studies need to be done.

I might also point out that while I completely understand why someone with MS would want to run off to a foreign country for treatment, sadly they're not helping their own cause to have CCSVI recognized in the least.  When people go elsewhere, or have it done 'underground', their medical data and results are kept secret.  If people really want to help, get involved in the clinical trials and let your results be part of the solution.  A YouTube video of a woman balancing on one leg post 'Liberation Treatment' is all fine and dandy, but it's not scientific evidence and does absolutely nothing to help the medical community evaluate CCVI further.

Before I end this post, I'd like to mention the fact everything written here is after months of research on the topic.  I firmly believe education is the greatest weapon when battling any disease, in my case, it just happens to be MS.  I urge everyone to educate themselves before making any choices that could ultimately effect your health.  Don't listen to internet or media hype, listen to the facts.  Ignorance may be bliss, but it could easily cost you your life.

Be well all, and never give up hope.
-Mis

3 comments:

  1. great for ccsvi

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  2. One or more people promoting this surgery, as a cure for MS, hold Business/Finance degree(s)and no doubt there is enough money to be made in promoting it. Dr. Zamboni holds a patent on a piece of equipment he claims is necessary to properly diagnose CCSVI. Considering how costly medical equipment has become, profits on something new and exclusive could be substantial.

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  3. I have had MS for 20 years and bad veins in my legs for 20 years. Veins in my legs have been stripped, injected and with compression stockings they feel liberated, free of exhaustion and the valves work well. My legs are looked at yearly and this is covered. My circulatory system as a whole has never been looked at, yet, I have had issues that could be vascular.
    When Zamboni's research hit the news, friends called me to say, "that sounds liek you" I will be heading to Germany in August for testing and hopefully CCSVI . Germany will do well with this research and Siemens will be great producers of future stents.

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