Thanks for the update @Isaiah_40_31 I’m sorry about the hearing loss but I love your attitude about it. Very inspirational. I just started having a little nerve pain in that same area. I know that the lower branch of the facial nerve got jangled during surgery. I had the same thought about the nerve healing process. Did you ever get worked up for SCDS? Hearing loss, hyperacusis and tinnitus all fit.
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I’m pleased that you feel the surgery was worth it, and that there have been some improvements, although not as much as you hoped…interesting that you’re not biting your lip, I wonder what has improved that- different bite or better nerve function to the muscles around your mouth?
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@Chrickychricky - I’m sorry you’ve got a bit of nerve pain going. They do let us know when they’re working at recovering! I hope yours goes away quickly.
Thank you for asking. My appt was due to be a telehealth mtg, & I’d hoped Dr. Hepworth would be able to pull up my imaging to discuss the “hole” in my skull, but, due to technical failure it ended up being a phone call so he said we’d talk about it at my follow-up after my US in a month or two. At the moment, I’m thinking I won’t do anything about it as wearing an earplug when I’m in a noisy place takes care of the hyperacusis & actually helps me hear better w/ my good ear. I’ve had several major surgeries over the last 10 years & am at an age where I’m concerned about the long-term effects of anesthesia on my memory.
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So happy to hear you’re still making progress. And that if you elect for a hearing aid it then it may assist you further. So interesting about the bite, and I wonder if it could be your jaw settling without strain. You went into the surgery hopeful, but realistic, and you’ve had some great benefits of having gone through it. And you as know better than most, the body is pretty awesome for long term improvements so with luck it only gets better and better and BETTER.
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Thank you for your kind words @Val7426! I forgot to add that vertigo which had left me alone for two years but reappeared in Oct. also appears to be gone now! So many victories! I hope JC experiences his own set of victories as the days/months pass.
I loved your final sentence, the body is pretty awesome for long term improvements so with luck it only gets better and better and BETTER. I totally agree!
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It’s been awhile since I updated this thread so here goes:
Based on the US I had just prior to my appointment w/ Dr. Hepworth a couple of weeks ago, both of my IJVs are open & happy now. 
During my appt., Dr. Hepworth told me he doesn’t believe Meniere’s Disease (which is considered to be idiopathic in origin & w/ which I was diagnosed in 2015) is truly a disease but a symptom. His take is it’s a symptom of vascular compression of the IJV(s), transverse sinus(es) &/or sigmoid sinuses & possibly others. This makes SO MUCH sense to me because of what I have learned about IJV compression, the symptoms it causes, & specifically the symptoms it caused for me. I desperately want to jump onto the Meniere’s Disease forum I joined & spread the word, but I previously tried providing some info along those lines to a couple of people there, & it wasn’t well received.
I also learned from him that I may have a form of dehiscence due to loss of bone from an inner ear surgery in 2019 which was an attempt by another ENT to slow the rate of my hearing reduction. That bone loss (see image below) is potentially what is causing the constant loud tinnitus in my left ear. The good news is that it may be able to be fixed by Dr. Gopen at UCLA. We’ve had other members who were diagnosed w/ SCDS which is the more common form of dehiscence syndrome & he was helpful for them, so I’m hopeful. Dehiscence repair won’t likely restore any hearing, but at least it may quiet the constant noise in that ear. If I qualify for the dehiscence repair, it will be much later this year.
In the image below, right is left & left is right. The inner ear on the left side of the picture is what a normal inner ear should look like. The inner ear on the right side of the pic is my left ear. The red arrow for the right ear is pointing at a small bone arch that is missing from the left ear. That small, thin bit of bone dampens sounds inside the head that shouldn’t normally be heard. Since it’s missing on the left, in theory, replacing it could reduce or eliminate the tinnitus in my left ear. The remainder of what’s missing are “air cells” which reportedly don’t significantly affect hearing. Maybe they’re the ears’ equivalent of the stylohyoid ligaments which don’t significantly affect swallowing when they’re removed. 
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Interesting info, I’m sorry that the surgery didn’t help with your hearing, but good news that your IJVs are properly open…it will be fascinating to hear (pardon the pun!) what Dr Gopen thinks if you’re pursuing that…
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@Isaiah_40_31 Thanks for the update and the image. I finally have my near ENT appointment on the 28th. I know my carotid artery is not encased in bone as it passes by the inner ear on the right. I suspect that the noise it creates is confusing my inner ear resulting in chronic dizziness (Tullio phenomenon). Let us know what you find out from UCLA.
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@Chrickychricky - I’m sorry for the situation w/ your carotid. Perhaps that’s a situation that would also be considered dehiscent. I don’t know enough about dehiscence to know how it’s specifically diagnosed except it’s caused by thin or missing bone in the inner ear.
I got impatient & called Dr. Gopen’s ofc today to see if I needed a referral or if I could self-refer. No doctor referral was needed. HOORAY! I’m in their system & will get a call back from his “out of state” scheduler as I’m no longer in CA. The other GREAT NEWS is that he does virtual initial consults. I’m really glad not to have to make a trip to L.A. just for a consult. I will definitely post updates on this.
Here’s the CT radiology report from my recent scan:
Left temporal bone: The external auditory canal is normal. There is a left wall of mastoidectomy. The bone over the left sigmoid sinus is thin and may be dehiscent. The bone over the medial and superior margin of the mastoid resection bed is thin and may be dehiscent. There is no mastoid fluid or demineralization. There is no middle ear fluid. The bone over the jugular bulb is thin at the level of the middle ear cavity.
IMPRESSION:
1. There is severe right worse than left temporomandibular joint arthritis.
2. The bone along the medial margin of the left mastoidectomy site is thin and may be dehiscent.
3. There is a thin or dehiscent left jugular bulb.
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Good morning,
I’m so happy hat you have already gotten yourself in the system with Dr. Gopen. Have you read,
A Hole in My Life: Battling Chronic Dizziness
Philippa Thomson?
It’s her crazy journey with dehiscence.
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I haven’t read Philippa’s story. Thx so much for the link. I’ll look it up today. 
Hi @Isaiah_40_31 I’m so glad that you were able to get into Dr. Goppen’s system so easily. It’s great that you didn’t need a referral and that he does virtual initial consults. I hope that you will be able to get that consult scheduled soon! Please keep us posted on what you find out. It just amazes me how many different things we can have going on inside our heads at one time. I’ll keep praying for you to find answers, treatment, & relief because I know that the tinnitus can be pretty draining.
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@vap - Thank you so much for your encouragement & prayers! I totally agree that we can have many different things going on at once. Unraveling what’s causing which symptoms goes back to that analogy often used on our forum about peeling back the layers of an onion. It’s a step by step, not all-at-once, process that takes patience & time.
Being a Christian, I believe God uses everything that happens in our lives for our benefit in some way or another, even if it’s just to be able to come alongside someone else who is also suffering to encourage them. When we lift up others, it helps to lift us up as well!
I wish you God’s healing & blessings on this Good Friday.
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Quickie update. Instead of a phone call from Dr. Gopen’s “out-of-state” rep., I received a general email w/ a list of many things that need to be provided to his office before I’ll receive a consult partially because I now live outside of California. I lived in Cali from 1963 till earlier this year. I wish that could count for something. 
For anyone else who may be considering seeing Dr. Gopen & who doesn’t live in California, here are the “hoops” you’ll need to jump through to get an appt. w/ him:
UCLA - Dr. Gopen Reg Info.docx (15.8 KB)
(Sorry I don’t know how to make it an attachment vs. a download)
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@Isaiah_40_31 Thanks so much! I hope you have a very blessed Resurrection Day!
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I understand why they want all that but it is too much.
Just look at my scans and tell me what you see. I may or may not have a particular symptom you are looking for. Too many ES patients get discounted because they didn’t have a particular symptom
I can provide my blood work but so what. It doesn’t fit the text book pattern. And as far as my medical notes …
filled with Drs who don’t know what they are doing
But I suppose all of that is necessary in case there is a very small chance you can find something..lol
I totally agree with this & thought that was all I would need to provide. SHEESH! It’s ok though. I’d rather have the doctor be totally informed of my history & have looked at my significant scans. I have no relevant blood tests so those aren’t a concern. Dr. Hepworth tentatively diagnosed me w/ dehiscence, & he’s apparently well acquainted w/ Dr. Gopen so I’ll have a solid referral. It’s just getting Dr. Hep’s ofc to provide my med records that will be tricky. 
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