Hi @Cindyd & welcome!
Well done to you for not giving up, researching yourself and for getting a diagnosis! Sadly you’re not alone with being fobbed off for years, it’s a common story on here…
I’m not able to label imaging, but looking at the first image it looks as though the C1 process is causing IJV compression along with the styloid, so you would be best to see a doctor who does a C1 shave as well. Unfortunately as there are so few doctors who do this, they do have long waits- Dr Hepworth in CO I think has the longest, Dr Cognetti in PA also is not seeing patients very quickly. I think that Dr Costantino in NY has a shorter waiting list, and also Dr Nakaji in AZ, although he requires more invasive testing…You mention having a catheter venogram; did you have pressure manometry with this as well? It’s one of the tests that Dr Nakaji wants doing before he agrees to surgery.
That’s not the news you wanted to hear I’m sure, but there are some medications which can help with IJV compression symptoms while you wait like Plavix, Brillinta, Eliquis, Xarelto, Diamox. Also some members have found supplements help a little, but obviously check with your doctor if you’re on other medications- Creatine, Trimetazidine & Citicoline have helped some members.
Sleeping propped up can also help with the head pressure- you’d need to do that after surgery so not a bad idea to get used to it beforehand! My head pressure was pretty grim before surgery so I had to sleep in a recliner for a while…
So sending you a hug, and hope that you can get an appointment to see one of these doctors, here’s the list in case you’ve not seen it:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
