Katherine, I have had CCSVI angioplasty twice, both times having the valve treated and my left jugular will not stay open. After my first CCSVI procedure I felt wonderful relief for about 6 weeks and then it started fading pretty quickly. When I went back in for round two (initially for a separate issue, but my IR looked around since he was already in) all my stenosed veins were as narrowed as before, except for my right jugular which was still mostly open, but my left was even worse than the first time (and most, or the worst of my symptoms are on left side). I also had a stent placed in my left iliac for May-Thurners. I also realized later, after learning so much on this website, that I had had a mast cell episode the day before my 2nd procedure (heat triggered) and I’m sure that did not help things (since I was not on any mast cell stabilizers at the time, etc.). So, treating the valve is not necessarily the only component of getting a good result.
Ever since my 2nd procedure last July I have a achy pain and hardness in my neck where I think my left jugular is and my symptoms have gotten worse. I wonder how blocked it is now.. it was 80% in July and 70% at my 1st procedure. Wouldn’t doubt it is 90% now.
My IR says I need stents in that jugular and my azygos (it won’t stay open either.. it has a web across it that does not resolve with angioplasty) but wants me to try to wait it out till the dissolving stents that are being developed in Europe are available in the US (4-5 more years!). Though at this point, with Dr. Diana’s information about the vagus nerve being pinched between the artery and the jugular in the sheath (and I have POTS) I would now be afraid to get any stent in there that might further pinch the vagus nerve.
I do have a great primary care doctor who watches Dr. Diana’s video’s and has read part 1 and 2 of the Driscol theory – yeah! He is trying to figure out the next steps he wants to take with me based on this new information. One of the things he is wondering is about cutting open the sheath to get the pressure off the vagus nerve. It would seem to me that if the pressure was removed then the mast cell/cytocines/TNF and all the autonomic stuff should clear up, if it is caused by the vagus nerve compression. Am I reading this wrong or missing something?