I haven't decided if I will join the clinical trial and get stents. I may try to find someone in my home city (which has a big medical school) who would be willing to do angioplasty as it is far less risky. However, 50% of the jugular veins get blocked again by 9 months with angioplasty--they had to be redone. And then, we don't know how long they would continue to stay open.

Actually, someone has already contacted the Neuroradiology Dept. in the medical school in my city and the RN there said the following in an email: the dept. does "angioplasty and stenting procedures for different indications including venous stenosis. This seems to be the heart of what CCSVI treatment addresses. The procedure itself is pretty straightforward and low risk. "

In fact, stents have been put into veins in various situations when blockage to other organs have occured (Budd Chiari syndrome is one of many examples, when the big vein that leads to the liver becomes occluded and a whole series of collateral veins develop around it to try to move the blood). According to Dr. Dake stents are used in veins all the time but stents in veins are considered "off label" use just like medications get used off label all the time. Dr. Dake has found a stent company to make and provide the stents for his clinical study. Who knows, maybe he will patent a jugular stent. I think he already has 15 patents under his belt so far. Thus, I am not as concerned about stents in veins--it's not like this is completely and absolutely new.

But to get back to the risk...I have a few months to decide what to do. I'm not keen on having stents in my veins to be honest with you. I'm not sure how I feel about being one of the "first." I think if it was 50% blocked it would be a different story. However, it was shocking to see 90% blockage on both my lower jugulars and the huge collateral vein system that had developed around the blockages (yes RW, I have a spaghetti head!!). Some of the "pioneers" who have had the surgery said life changed so much it was like going from analog television to HD TV in terms of brain function, clarity, fatigue etc.

Here is a fantastic explanation of what we know so far and what needs to be tested further written by the Multiple Sclerosis Association of America.

http://msassociation.org/news_center...le.asp?a=ccsvi

I will let you know what I decide.