CCSVI

[Ojibajo]

What is CCSVI?

[Lulu54]

It never hurts to listen, but keep in mind the pro-CCSVI have an almost zealot approach to this treatment.  Do your research and make up your mind independent of what any of us have to say.  

[Ojibajo]

Someone at work emailed me about it during MS awareness week when he saw my Fundraising Posts and he is INSISTENT that I meet with him so that he could tell me all about it.  

[sllowe]

Hi Oji,

Stenting veins is definitely not comparible to stenting arteries. And, the jury is still out on this one - the future will tell us more where this theory is concerned. We kicked it around her a bit. I can dig for links, but will point you directly to Shoshin's journal. She had the procedure done and she's a veteran on our forum.

Mike, I forgot you went for the test too. So, you don't know if you have any blocks yet? I look forward to hearing more after your appt.!

Sho's journal:
http://www.medhelp.org/posts/Multiple-Sclerosis/CCSVI-journal-update/show/1257886

-Shell

[Mike_Shuswap]

Chronic CerebroSpinal Venous Insuffinciency (CCSVI)

I'm an MS'er who's participated in a study and just waiting for my results.

I have an app't next week and will post the findings.

[jensequitur]

I've only ever read about the process - never met anybody who had it done.  At first people thought that CCSVI caused MS.  Zamboni theorized that blood backing up in the brain caused iron deposits, creating neurological problems.  Not a bad idea, but as Lulu says, not everybody with MS has CCSVI.  

For me it's a chicken/egg question.  Did MS cause CCSVI, or did CCSVI cause MS?  One of the theories out there is that MS somehow causes problems with the vascular system.  It wouldn't surprise me - so far, I've had venous insufficiency in my left leg, a blood clot in my right leg, and Reynaud's in my hands.  I've also had a problem on and off with orthostatic hypotension - but it never sticks around long enough to be diagnosed.  All of which tells me that there's something weird going on with my vascular system.

[Lulu54]

Controversial.  It is a theory that obstructed venous flow in the brain either causes MS or contributes to its symptoms.  If you search this community you will see a few posts.  We have pretty much stayed clear of the debate, and are waiting to see what the controlled trials show.

The originator of the theory, Dr. Zamboni recommends that people hold off on the procedure until further studies are done.  No one has been able to duplicate his results in their tests.

There are plenty of places that will take your money and do the procedure - similar to a heart catherization but involves the jugglar veins and venous flow in the brain, sometimes implanting stents -  you can go to China, Costa Rica, Bulgaria, and California to have it done.  

We do have a couple people here who have done the procedure, and they report mixed results.

I'm sure you'll hear from a number of them with your question.  

Lulu