UPDATE - Consult with Dr Patsalides
Previous post:
https://www.reddit.com/r/PulsatileTinnitus/s/dCrORPr6k6
Recap:
For most of my life I've dealt with unexplained chronic health issues - constant nausea, dizziness, migraines, vision problems, brain fog, etc. About a decade ago I developed a whooshing sound in my ear that was dismissed as a sinus/Eustachian tube issue, but surgery for that didn't help, and I bounced between various specialists trying to find the source of my symptoms for years.
After doing some digging online, I learned about pulsatile tinnitus and became convinced it could be related to venous sinus stenosis. I finally convinced my neurologist to order an MRV, hoping I'd finally have an explanation for years of symptoms.
Update:
As unfortunately expected, my neurologist and several others at his practice (DENT Neurology in Buffalo NY) concluded my MRV was normal and sent me on my way.
Man. I could see the stenosis myself on the scans.
I had already filled out patient forms for Dr Patsalides by this point, and with a copy of my MRV immediately scheduled a consult with him, which I had a few days ago.
And... I was right.
Bilateral venous sinus stenosis; right dominant with post stenotic venous aneurysm.
He recommended stenting surgery right off the bat. Didn't mention trying medications first (to be fair, I'm already on Topiramate). Didn't tell me to lose weight (the go-to solution given by every doctor ever). Didn't make me feel like an idiot.
I have seen countless doctors over the years. Dozens. Specialists across every spectrum. Never before had I felt like a doctor actually listened to me. Validated my experience. I'm genuinely still reeling from it.
Unfortunately, he doesn't think the stenosis could be causing my nausea problems - but I kind of expected that. Honestly, even if we can just fix the constant noise, I'll be able to handle the rest of my symptoms so much easier.
So... Hopefully sometime next week his scheduler will call me, and get me a date for surgery. Me and my husband will make the drive out to NYC, grab a slice of pizza, maybe a bagel or two, and I'll have some minor brain surgery.
And then... Maybe I can start feeling human again.