7 months post op with Hepworth update

General
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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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Dr. Hackman Surgery 2/28/22 + Full Story
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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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Hello again! I wanted to update everyone on my journey. I hope I’m picking up in the right place. (It looks as though I may have left off here). I ended up having a large area of dehiscence on my right side and mild on the left Re: Superior Semi-Circular Canal Dehiscence. (SSCD). In August of 2024 I had surgical repair by Dr. Quinton Gopen and Isaac Yang at UCLA. With not much recovery, I completed 6 months of Vestibular Rehab. It was an excellent program and I did gain some improvement, but I am still not very functional. The dizziness and brain fog along with fatigue and migraines are a lot to deal with all these years. You all can understand. I still very hard. My health has taken me in some new directions. I have recently been diagnosed at Mayo Clinic with HSD (Hypermobility Spectrum Disorder) and am being treated at their Ehler’s Danlos Clinic. I also have a recent diagnosis of Fibromyalgia and PPPD. Mayo continues to treat my chronic migraines. I want Dr. Hepworth to weigh-in at this point, with no luck yet. I have been trying to get a CT of pelvis and abdomen to Dr. Hepworth’s office for 4 months now. It really shouldn’t be that difficult. I have a hired RN care manager assisting. I really want him to see my recent CT head, neck, abdomen and pelvis scans that Alison ordered to check for compression. After extensive audiology and VEMP re-testing, I was told I now have equal bilateral SSCD (though I repaired the more severe right side in August 2024). Not sure where to go from here. Is education and more intense pacing the end of the line?

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@EaglesWin - I’m so sorry your SSCD surgery hasn’t made much difference. You mentioned you have it bilaterally. Did Dr. Gopen suggest getting the left side done as well? Any possibility that the remaining dehiscence is behind the symptoms you still have?

There’s another doctor in Maryland who does SSCD surgeries - Dr. John Carey. He supposedly pioneered the surgical repair technique for SSCD. If you’re up to it, you could get a second opinion from him: Dr. John P. Carey, MD - Baltimore, MD - Neurotology, Otolaryngology, Otology - Schedule an Appointment

I’ve forgotten if your IJV compression was bilateral or unilateral. You previously mentioned having bilateral styloid elongation but only that you’ve had one of them resected & one IJV decompressed by Dr. Hepworth. Often in bilateral cases, both styloids need to be shortened, & if there is bilateral IJV compression, both IJVs need to be decompressed to get the best results. Is surgery for your left styloid/IJV something you’ve discussed w/ Dr. Hepworth in the past?

I’m so sorry that you’re also dealing w/ hypermobility & the complications that can cause. Dr. Fraser Henderson in WA, DC, has an excellent reputation for working w/ those who have hypermobility: https://www.umms.org/find-a-doctor/profiles/dr-fraser-henderson-jr-md-1598104259

I don’t believe you’re at the end of the line. There are still other excellent doctors/surgeons who may be able to help you.

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I’m sorry that you’re still suffering with the dizziness and fatigue, it must be horrible :hugs:
@Isaiah_40_31 has given you info, I don’t know as much so can’t suggest anything, other than have you been evaluated for POTS? Maybe you might find some of the hEDS info in this discussion by @stoeserm1 & @Snapple2020
New here, hanging on to life by a thread, don’t know where to go next - General - Living with Eagle
I hope that you hear back from Dr Hepworth’s office soon, it seems to be a real hassle getting through to them! :hugs:

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Ive been going thru the ringer much like you. I do have EDS and have struggled with neck issues for some 50 years. It has been a journey to say the least. I dont have SSCD but I do have odd issues such as no acoustic reflex in one side and ongoing positional dizziness. I did get consult at Chicago Hearing & Dizziness that suggests I might have a compressed nerve in my neck - this is likely based on US. I had ES surgery in 2019 however not with Hepworth which I am now being reevaluated for given a bad spell of vertigo and vomitting back in Aug. Massive ear issues and significant rapid hearing loss in one side. Vestibular rehab (BPPV) did nothing of me and one doc suggested Vestibular migraine however my neurologist disagreed and thought is was my ears. There is some suggestion of Menieres however Im going in for eval for vascular compression. Interesting a new scan revealed noticeable styloids when I had them taken off at skull base in 2019? Im certain I have some kind of compression and possible scar tissue in my neck. I suspect the ES surgeon also left calcified ligaments in my neck and did not address vascular compression. We will see where this takes me.

You mentioned pelvis and abdomen scans which I am also evaluating myself. Curious what’s up with you? I am scheduled to fly in to St. Louis to see Dr. Hacker who specializes in Pelvic Venous Compression which is more common in EDS patients. I also just had surgery in Sept for a spigalian hernia….also more common in EDS who have had multiple pregnancies. ..Im assuming since you have been to MAYO, they have checked your heart rate? POTS?

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