 |
Member
|
|
Join Date: Jan 2008
Location: Southern California
Posts: 308
|
|
|
Member
Join Date: Jan 2008
Location: Southern California
Posts: 308
|
If you are interested in CCSVI, best to check out the board on thisisms.com - they have an entire forum dedicated to it. Many have had it so far. They USED to do it at Stanford but stopped and are now gearing up for studies. Not too many places in the States are doing it - but some have been fortunate to find docs willing to take a chance on it (it hasn't been studied and regulated fully yet). Many are going overseas to do it (mostly Poland I believe). People are experiencing great results, though they aren't always long lived (some re-stenose and have to go back again, etc.). Apparently it is great results right out of the starting gate and then it may fizzle a little bit. For those who have done it, many are touting it as excellent.
As for talking to your neuros about it - don't hold your breath. The whole underlying principle behind CCSVI is that it is NOT a neurological issue - and thus neuros don't like it too much (well that and the pesky fact is hasn't been well studied yet!  )....You need an IR (interventional radiologist, I believe) on your side.
Anyhow for more specific info, check out the TIMS site...
but be careful - there are some real 'nuts' on there....
|