Lets discuss CCSVI shall we?

[AshNight]

what gives? Every time I research something or youtube something there's all these ppl that swear by it. Yeah maybe the blocked veins can have debilitating effects on your body, but what about my optic neuritis? Did my optic nerve dymeyelinate cuz my veins are blocked? Someone plz add your two cents

[ActiveMSers]

Opinions on CCSVI range from brilliant cure to total sham—it's hard to sort through. I've found Julie Stachowiak's blog on About.com keeps it pretty down-to-earth and is balanced. She is an epidemiologist (PhD) who has had MS for over 15 years. Like myself, she's enthused by CCSVI but not overly rah-rah until more scientific data comes out.

What is CCSVI
http://ms.about.com/od/newsresearch/a/ccsvi_intro.htm

CCSVI causes
http://ms.about.com/od/newsresearch/a/ccsvi_causes.htm

Treatment reports from patients
http://ms.about.com/b/2009/12/16/ccs...m-patients.htm

What CCSVI feels like
http://ms.about.com/b/2011/03/08/wha...-feel-like.htm

Feelings about retenosis
http://ms.about.com/b/2011/05/16/fee...-treatment.htm

If you want to read a whole lot more, there is a huge CCSVI fan club at ThisIsMS with links and research galore. Be warned that the forum can get heated (in particular for naysayers), but the mods generally do a good job of keeping it civil.
http://www.thisisms.com/forum-40.html

I'm sure there are people on this forum who have done the procedure or who are looking into it. I'd be interested to hear their experiences if they care to chime in....

[shucks]

The thisisms forums have tons of info on ccsvi. I'm not convinced, but I really like reading about what's on the horizon.

[fastbenz]

I had it done Nov of last year. Both of my veins were 90% blocked in my neck. The left side in 2 places. There were able to get me to down to 35% blocked on one side and 65% on the other. I did not want to do a stent. I immediately got warmth back in my hands and brain fog went away. My heat tolerance was/is still much better. I can take a hot shower now(not blazing) but better than the luke warm before hand. I do believe my veins have closed back up some getting some numbness and cold feeling in my hands again. For me it was well worth it. My QOL is much better and I'm off Nuvigil for energy since last year. I just wish the stent technology was better for the neck area. It was worth it for me.