I talked to my Dr about CCSVI

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

I talked to my Dr about CCSVI

Postby catfreak » Wed Jun 24, 2009 8:42 pm

I had my MRI, Tysabri and saw my Neuro on Monday. No new lesions and no change in MRI. (yeah)

I asked if he had heard about the research being done with CCSVI. He said he had and it sounded very exciting. He said it was great the some docs were thinking out side the box and looking at stuff like the venous issues. He even showed me on a brain poster hanging on the wall the venous structure in the skull and tried to explain some things to me but I was lost. He said it was very very promising research. I told him I knew of some that were already getting the stints put in and it really seemed to be improving their quality of life. He seemed to think it would have to improve many things going on with MS. He believes the research will not just benefit MS patients but other disorders as well.

I go back in 3 months and may take some materials with me. When will Zamboni be published? Is Dr Dake going to publish his research?

Who all has been and had surgery and who is signed up to go?

Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby cheerleader » Wed Jun 24, 2009 9:42 pm

Hey Cat-
Thanks for posting! Glad to hear your MRI didn't show any change. You are a lucky gal to have such an open and knowledgeable neuro. The Dake and Zamboni research and much more will be released on Sept. 8 at the CCSVI convention in Bologna, Italy. We'll probably be posting stuff then, so you can print it out (in case your neuro hasn't read it already.)
all the best,
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby Sharon » Thu Jun 25, 2009 6:09 am

This is such great news, Cat - no new lesions and a neurologist who is willing to look outside the box! A good day for MS.
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