7 months post op with Hepworth update

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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.

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I’m glad that you feel the surgery was helpful with some symptoms, & that Dr Hepworth has still been helping with your treatment… but so sorry that you’re still getting such debilitating symptoms.
Is your styloid elongated on the remaining side? If so that could still be causing symptoms, but I presume that Dr H would’ve suggested that if necessary?
SSCDS can certainly cause debilitating dizziness so could well be an issue for you, frustrating that Mayo want you to wait & keep trying other things (as well as being skeptical of you!) Mayo are known to be dismissive of ES I think so not surprising… I hope that the doctor in Florida is more helpful…
Sending you a hug and praying that you can get the right treatment :hugs: :pray:

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Thank you so much for your update, @EaglesWin! I’m really sorry you didn’t get better symptoms resolution but it’s great to hear that Dr. Hepworth continues to go to bat for you & is standing by your side trying to help you find the cause of your remaining symptoms so you can get resolution of them.

Since you noted in the past that you have bilateral ES, have you considered a second styloidectomy to remove the remaining styloid? I also had bilateral ES & found that some of the symptoms remaining on the right side after I had my right styloidectomy, disappeared after my left styloidectomy. I can’t recall if you had bilateral IJV compression, but I assume if you did, Dr. Hepworth would have recommended left styloidectomy (if necessary) to help decompress your left IJV. He has pointed out that our circulatory system is circular, & if there’s a kink anywhere in that circle, adverse symptoms can occur.

Bilateral SCDS sure sounds like no fun as well. I’m glad you’ve got a consult w/ Dr. Gopen as I’ve heard he’s the best doctor in the US to see for SCDS. Please let us know what you learn from your consult with him.

I will continue to hope/pray that you’re able to find the source of & resolution for your remaining symptoms so you can get back to living your life.

:hugs: :pray:

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