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The Web Forum on CSSVI

Posted Apr 15 2010 6:07pm
Sarah Palin was in Hamilton today for a charity fundraiser. Enough said about that.

Yesterday I watched the web forum on CSSVI. featuring
Dr. Paolo Zamboni, Director, Vascular Diseases Center, University of Ferrara, Italy
Dr. Robert Zivadinov, Associate Professor of Neurology, University of Buffalo, State University of NY
Dr. Andrew Common, Radiologist in Chief, St. Michaels Hospital, University of Toronto, Ontario, CA
Dr. Aaron Miller, Professor of Neurology & Director of the MS Center at Mount Sinai, NY, member of the AAN Board 
I learned more about veins than I ever knew!
The talk centered around the results of  research of Dr. Zamboni and Dr. Zivadinov regarding CSSVI and MS. In short CSSVI, is a narrowing or distortion of viens in the neck which restricts blood flow from the brain.  All the participates also discussed the "liberation treatment" as it is know; surgery to insert an angioplasty ballon or stent in the neck vein to increase blood drainage from the brain. 
 Lots of medical research stuff I couldn't understand but otherwise the discussion was very positive, very encouranging. The forum was extended an extra 15 minutes to take questions from the audience and  the web.  7,000 questions had been submitted prior to the conference!

 All the doctors agreed that if you decide to have the operation you should do it as part of a clinical trial and not  outside of one. So don't buy a ticket to Poland just yet. Dr. Zamboni did say that an exception could be made for a person  who is declining and not responding to any treatment. Dr. Zivadinov added that patients rights should be respected and if an individual did decide to seek the treatment outside of a clinical trial, that they be monitored closely by their Neurologist. 
My conclusion The research and treatment are very promising, however it is not a cure.

The surgery  has the greatest impact on improving fatigue and minimizing future relapses. This does not mean you will never have another relapse, nor will your MS cease to progress.

There is a strong possibility of  the placebo effect.  The same can be said however, of any other MS treatments currently in use.

This conference and  the  interest in more clinical trials, has very clearly (at least to me) been patient driven.

I have more respect and understanding of the power of the internet.

The only thing that really bugged me is how all the neurologists kept emphasizing how successful  drug treatment has been to  reduce relapses and slow progression of MS . Based on my own research, I can find no evidence to support that.


Oh ! and one other thing that bugs me, not related to the web forum. The doctor in Canada who made lots of noise  and was quoted in a national newspaper, claiming that  the entire CSSVI research and treatment was "a hoax".  He said it would take valueable research dollars away from other research (the kind he was doing) He back pedaled and said on national television that  he was misquoted, after it was revealed that he has now applied for a research grant to study those very things!!

Sorry for any mistakes in my post. My spell checker refuse to work. When I 'm very tired; like right now, I make a mess of my spelling. "How" becomes "who" and I always seem to leave an " e" out of intersting!!
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