I know of two well known docs in Chicago! (Dr. Hector Ferral and Dr. Arslan).
It is about three to four doctors in the IR department that are treating the condition under the Chief. It's a well-known medical center in the south where this is being done.
That sounds good. This is at a hospital, not a clinic? We need academic hospitals to get involved so there can be write-ups in the medical literature. It's encouraging too that the entire department is involved.
Hospitals are also likely to have intravascular ultrasound already available. It might be something to ask about, and to make sure they've read what research there is on IVUS use in CCSVI. Not all doctors use IVUS, but the ones who do seem very convinced about it.
Let us know how it goes on the 25th. I'm rereading what you said about them not wanting to use stents which seems very wise. Stents are rarely used in CCSVI although they were more common back in 2009 and 2010 before all the problems with them manifested.
This was a tough decision for me to go back so soon. I understand the potential for the vein to go right back to baseline even after a 2nd procedure, particularly considering the fact that I restenosed so quickly.
Do you have images from the procedure? Are you able to tell from the final image if the vein is opened up completely, or if it appears that there was residual stenosis in the final image? The quick restenosis could be more easily explained if the vein was not opened up completely. Quick restenosis or loss of improvements can also be due to clotting, but the venous CT scan would have ruled that out.
As I mentioned, I had an 80% stenosis of the right jugular vein just under the clavicle.
The good news is that under or near the clavicle is the common location for jugular valve stenosis, which is what's very commonly seen in CCSVI. If you'd been posting that your jugular stenosis was up near the skull base, that would not have been good (since that is not a common area, and could be reflective of your IR potentially being inexperienced, and is an area that can easily lead to vein injury and occlusion).
I am not a doctor and none of this is meant as medical advice.