Hi Friends. Forgive me for my long delay. Please know I have been wishing you all well behind the scenes. I posted back in September about my successful right styloidectomy / IJV decompression surgery from August 21, 2023 with Dr. Hepworth.
Seven months later my most notable resolutions: I can talk, chew, swallow, yawn without any pain or difficulty. Less pain in my neck on that side. (It was quite severe)
Unresolved: daily headaches, daily imbalance/ dizziness, brain fog, coordination issues, tinnitus, pulsatile tinnitus and some other symptoms. I’m still pretty debilitated, but surgery was absolutely worth it.
I am now on long term disability and haven’t been able to work or drive since June 2023. Trying to get back to work and life as soon as I can. Depression is setting in.
Dr. Hepworth has been by my side the entire time. I have complete faith in him. Prior to my surgery he suspected Superior Semi-Circular canal dehiscence as well as Axial rotation.
I’ve been to my neurologist at Mayo Clinic who has tried to convince me my surgery was unnecessary. Dr. Hepworth has spoken to my doctor on several occasions, but since the surgery they are treating me as though I lack credibility. That being said, Mayo insists I am suffering from Vestibular Migraines. I’ve undergone aggressive treatments (one week in hospital with infusions, lots of different medication trials, etc. My headaches are still there daily at some level along with the dizziness.
Thanks to Dr. Hepworth, I saw the neurotologist at Mayo who did audiology and VEMP testing. SSCD is suspected on the right side and possibly the left. Their recommendation is wait until my vestibular migraine symptoms calm, then start vestibular therapy. So I wait.
Mayo also did vein mapping via angiogram to rule out intracranial hypertension. They question if I e er had it but the IJV compression was obvious on pre-op CT scan. Pressures measured during Mayo angiogram were normal, though Dr. Hepworth believes I still could have it based on my symptoms.
Per Dr. H, I sent my neurotology records to Dr. Quinton Gopen at UCLA for second opinion on SSCD. (I’m in Florida). My consult is May 29th.
Sorry this is so long. Like many of you, I’ve been playing the waiting game with my life for so long.
Would love your feedback.