This Is MS Multiple Sclerosis Community: Knowledge & Support

In the early days of treating CCSVI (that seems like a silly thing to say since it was just a couple of years ago) there was a greater use of stents. If I recall correctly, the first CCSVI treatments done in the U.S. were done by Dr. Drake at Stanford and he used stents exclusively. This was well before doctors began focusing on valves.

It also seems to me that a couple of years ago we were seeing many venograms posted here on TIMS and a large percentage of the narrowings were located low in the IJV, about collar bone level, which is the most common location of the valves.

So if I put these two antidotal observations together, I wonder if most of the early stents were coincidentally placed at the location of the valves with the result that the valves were held permanently open. I ask this because it seems to me that those who had early stent placement and didn’t have stent complications, seem to have extraordinarily good long term results.

Comments?

Bruce.

Agreed, mostly. In the beginning, the different doctors were finding CCSVI in different places. Dr. Dake found more stenosis in the upper jugulars than either Dr. Simka or Dr. Zamboni's team. Dr. Zamboni's team found more stenosis in the azygous.

Without looking with IVUS, they might not know it was a valve causing the narrowing, but it was narrowed and that's where the stent or ballooning went.

Does anyone know when Dr. Zamboni's team began talking about the valves? Was it early on?

I'd love to see a paper from Dr. Dake on long-term outcomes with stents in CCSVI, including what percentage have had stent complications and if those complications have been treatable. He has had follow-up with patients. I suppose an IRB would have to approve any release of that information.

I am frustrated that it is taking so long for the politics to be sorted out so Dr. Dake can begin his RCT. Everything he said about it at last January's ISET seemed like it was well-designed and would be informative. And this was just a small RCT to pave the way for a larger one. If this one doesn't get underway, when will the next one?