This Is MS Multiple Sclerosis Community: Knowledge & Support

Sorry, I am new to this site and probably using it totally wrong.
I have just persuaded my GP to get me tested for CCSVI. Whether or not treatment follows is another matter. I want to know where to look for a) what to expect from the tests and b) what options there are for treatment including maybe alternatively (like horse chestnut that I have been taking for 3 months). There are pages and pages on CCSVI and I don't know how to look through them bar reading the lot.
Any advice?
Janet

Joana, Here is a nice well organized website about CCSVI. I think most of your questions will be answered here :

http://csvi-ms.net/en

Plus read all the Stickies on this board.

ozarkcanoer

Thanks. I've already looked at that site.
I was just looking for quick answers.
How do I look for answers here? Do I have to read each post on CCSVI?

I think that there are no quick answers. All of us have had to educate ourselves thoroughly in order to make the right decisions concerning CCSVI. Most MS societies are not recommending any imaging or surgery for CCSVI at this time. Please read the stickies on this board and on the other board I pointed out to you.

ozarkcanoer

You could also make good use of the search function at the top to zero in on any relevant stuff. Did you have any specific questions we can help with? Also on the search some are clicking the "display as posts" part instead of "display as threads" that zero's it in faster.

Oops you DID have some specific q's duh on me lol. Okay Mr. quick and dirty here will give you the lowdown, but not as advice just what people were and are doing. First of all I'm assuming you have either educated your doctor, or he already knows what tests to ask for? Since the term CCSVI isn't commonplace right now of course. Most are getting at a minimum an MRV/MRI to check the veins and the brain. This helps to zero in on problem areas. Also the Ultrasound test checking for reflux in the veins is another biggie, but VERY difficult to perform properly in the States here without much experience and training, even for skilled operators. Without those tests there is no way to discuss therapeutic options with your MD, although some have talked of Horse Chestnut on here, I don't know much about it myself. That would be a good one to do a search on in here.

Keep in mind this is all VERY brand new and most centers and hospitals aren't on board with treatment options, just limited testing via study protocols and even that is in it's pre-natal stage. What one does on their own, between them and their doctor, is up to the individual.

Mark.

PS in the "what should you expect" part, the MRV is just like an MRI but longer, and you will have an IV sent in there with you for the contrast dye, and it is a long test. Least ours were. The UT should you get someone to perform it that knows what they are doing and have the proper equipment, is not a big deal either, just a scan of your neck region looking for reflux. Don't be surprised or dismayed if the operator doesn't *see* anything on that, it is difficult to conduct the test and the equipment in Europe is better than ours by a long stretch.

_________________
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap