CCSVI why is it dangerous?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Cece » Thu Jul 07, 2011 9:18 am

For awhile in the improvements thread, I tracked how long it had been since the patient's procedure, and some were recent and some were six months to a year. I am at five months myself and have sustained improvements. Cheer's husband is at two years.

These are just anecdotes until we get some real research numbers. Dr. Mehta presented at ISNVD with early results from his trial showing sustained fatigue improvements at four months, if I recall correctly. Dr. Arata just stated that he has a paper accepted for publication but I am not aware of if they are doing much follow-up with patients so I am guessing the paper will focus on the procedure itself, just as Dr. Siskin's safety paper does, and not the longer term.
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Postby mavis » Thu Jul 07, 2011 10:59 am

pklittle wrote:
A difference between that and CCSVI is that the numbers are so great. I maintain the "improvement reports" thread and that alone is about 18 pages worth of patient after patient, interviewed by reporters, talking about their improvements. This is not a "lone voice" phenomenon....


How many of the numerous "success stories" have sustained their improvements over more than say, a few months though?


Let's also not forget that there is a 18 page thread here on this site called "CCSVI not working".
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Postby 1eye » Thu Jul 07, 2011 1:14 pm

I don't know how well i am fending off procedure number 2. But I am getting good at having a bit more exercise than i did the last few years. It helps with blood flow.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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