Just wanted to welcome new visitors to the site. We've been referring folks here from Facebook and other places to come and learn-
Learn all you can about CCSVI. Read the research sticky and the long, long thread. Check out the glossary, there are alot of new terms. Become acquainted with the search function. Most every question you can think of has been discussed before.
As far as diagnosis and treatment- I recommend that individuals bring this research to their physicians and neurologists. I took this research to Stanford's interventional radiology department, where Dr. Dake saw the implications, tested my husband with MRV (magnetic resonance venography) and treated him with stents for his two closed jugulars. Dr. Dake has since treated about 40 more patients with CCSVI using stents and ballooning. If you want to contact him, search his name and contact, and all the info will come up. It's been posted about 10 times in this forum.
Because this is a new way of looking at MS, it is important that patients understand the research, the testing, and what to ask for. You need to become your own advocate...and if you are unable, ask a family member or caregiver to help you. It will take a while for this approach to become mainstream, and I understand that not everyone wants to wait for that.
There are many voices expressing caution as to going ahead with treatment, and it's important that MS patients understand that all surgical procedures carry risks. We still do not know the full ramifications of stenting. My husband is doing quite well at 4 months post op, but we do not have a crystal ball as to his future. As in most things, only time will tell.
So, read, learn...if you truly can't find something, start a new topic thread, and some of the elders will help out. There's alot here, and it may seem daunting, but we're all learning together, and as the community grows and we bring more doctors along, we'll share their information as well.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09