Intro Story from AZ, with Images

General
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Thanks for the feedback! The slurring words is very subtle, as my wife can’t tell that I’m doing it. But I definitely have periods were I feel like a can’t talk as fluidly as other times, very strange. I also notice that I have more cognitive issues after meals, so I’m not sure if blood is being diverted away from my brain to my stomach. I live in Arizona which has very hot weather, but when I’m in colder weather I also notice that I have more problems with my speech, maybe blood flow related again. Not sure what to make of all of these weird symptoms.

It sounds like your surgery in the UK went well. Curious who is the doctor you see? I’ve heard about Dr. Saeed. It feels like I need to take care of my IJV compression before I consider SSCD surgery since I’ve heard of the surgical repairs eroding again since the patient still had high pressure in his or her head.

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Well your on the right path. I think Dr Athos Patsalides is in NY and is familiar with everything that might be going on with you. I think he is a neurointerventional radiologist and deals with a lot of pulsitile tinnitus due to to stenosis in the venous sinus. He might be in collaboration with Dr. Constanino in NY to do do IJV decompression if needed. I think your on the right path and Dr. P will be able to figure out whats going on with you.

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@tguerin18 - another possibility w/ your speech challenge could be your hypoglossal nerve is affected which is subtly affecting your tongue muscle making it more difficult intermittently to speak. I my hypoglossal nerve was irritated during my first surgery & my tongue became partially paralyzed which made eating & speaking clearly very difficult for a number of months.

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I saw Mr Axon at Addenbrooks in Cambridge, he’s co-authored a research paper that @KoolDude posted:

Dr. Higgins & Dr. Axon : Spontaneous Intracranial Hypotension Complicated by Subdural Effusions Treated by Surgical Relief of Cranial Venous Outflow Obstruction - General / Research Papers - Living with Eagle

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Thanks! I was curios if it was Dr. Higgins, as I’ve watched a video with him and he seems like a pioneer in this area.

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That’s interesting about that nerve. I also feel very emotional when my symptoms get bad. I wonder if that could be related to a nerve getting compressed?

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Here’s one more image from my first CT scan back in 2023 for my SSCD. Now that I know what I’m looking at, it seems my styloid is so very close to the C1. Curious if any has input on that distance, i.e. does mine look worse than is “typical” for this condition? I know this is very subjective and we are only speculating here, but I just don’t see how a jugular vein could function in this tiny area.

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The vagus nerve is the most likely culprit where anxiety & getting emotional are involved. It has many functions but one of them is it can induce anxiety when it’s annoyed & since it lies between the styloid, IJV & C1, if the IJV is getting squashed by C1 then the vagus nerve is too, most likely.

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That could explain it. It’s like I get this feeling at my core that I can’t explain and then I suddenly feel like crying. :slight_smile: Thanks!

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You’re right - your IJV likely isn’t (at least optimally) functioning in that tiny space. You have one of the tighter styloid-C1 spaces I’ve seen. And like @Isaiah_40_31 said, your vagus is likely getting compressed there too.

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Hey Trent! Maybe we should start a study to see if people named “Trent” are more likely to have ES. :slight_smile:

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Hi @tguerin18 ! I am also from AZ. Native Tucsonan (Go Cats!). I am curious as to who you saw that gave you the SSCD diagnosis and if they are in Arizona. Please let me know. I don’t have PT, but I do have constant, high-pitch tinnitus - like my whole adult life (I’m 55). I just had my second styloidectomy/IJV decompression last week with Dr. Hepworth in Denver. I’ll be asking him more about it at my 3 month follow up, but curious to know your path. Thanks!

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Hey! Thanks for reaching out to me. I’ve seen several docs in AZ about my SSCD condition, most notably Dr. Stevens at Barrow and Dr. Deep at May. They are both neuro-otologists and tough to get into without a referral from another doc. My first step was getting a CT scan on my temporal bone, but you might already have that since you’ve had surgery with Dr. Hepworth.

I’m curious to hear more about your process with Dr. Hepworth too! Did you try to see Dr. Nakaji in AZ? I’m still waiting on an official diagnosis regarding ES, but I have a CT venogram in October with Dr. Mehta in October. What city are located in?

Feel free to ask me anything about SSCD, too!

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I also want to add that I’ve been out to UCLA to meet with there doctors there, as they do lots of SSCD surgeries. They viewed me as a surgery candidate, but Barrow and Mayo suggested against it. Very confusing!!!

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@Ladymaestro1 how are you after your surgery? I’ve been praying that it will be successful for you :hugs: :folded_hands:

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@tguerin18 - I have atypical dehiscence due to too much bone being removed from my inner ear during an inner ear surgery. Dr. Hepworth diagnosed mine & mentioned a possible referral to Dr. Gopen at UCLA. I know he specializes in SSCDS repairs but when I contacted him to see if he’d consider my case, he turned me down flat. I don’t think he even read the information I sent regarding my situation but only looked at my CT scan, & said, NOPE! I’m hoping when I have my telehealth appt w/ Dr. Hepworth in Sept., that he can either give me another referral or make an appeal to Dr. Gopen for me.

The information you gave @Ladymaestro1 regarding the doctors in AZ who diagnosed you is actually helpful for me. I was a CA resident from 1963-2025 but have now moved out of the state which means jumping through a complex series of hoops to have a telehealth consult with Dr. Gopen. If only I’d gotten the diagnosis & follow up done while we still lived in CA it would have been “a skate in the park”!

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I think Gopen and Yang at UCLA are doing exclusively SSCD surgeries at this point. What part of the ear has your dehiscence? Another doc you could look into is Dr. Gianoli in Louisiana. He is very familiar with all ear conditions, but the downside is doesn’t accept insurance. Not sure of your financial situation, but he does 1 hour phone consults if you send him all your imaging for around $400.

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Hi @Jules! Thanks for asking! I am 9 days out. My incision site and healing was FAR less pain/recovery this time around. However, my daily, upright high head pressures, dizziness and constant high-pitch tinnitus are WAY ramped up. It is hard to hold my head up, as usual. Resolves a lot when I recline. I do have sensations that feel like flow might be trying to do some changing, or push my brain back to where it’s supposed to be. Dr. H said I have minor brain sag due to high pressure. (Crowded cerebellum area)
Here’s to praying my vertebral venous plexus engorgement goes away, my blood/CSF flow finds normal routes and the internal swelling calms soon!

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@tguerin18 Thanks for the info! I am in Tucson, but I drive up to Barrow to see Dr. Robblee, who is my Neurologist. She first suspected CSF leak and I went through MRIs/blood patch and ultimately out to see Dr. Schievink at Cedars for invasive imaging (MRIs, DSMs, CTM). No spinal leaks/fistulas found so far… but I do have a TON of perineural nerve root sleeve cysts along my entire spine… which can be an indicator of longtime high pressure.

In the middle of that, I found my way here and @Isaiah_40_31 helped me see my grossly elongated styloids on a plain CT I had. Dr. Robblee referred me to Dr. Lawton. He ordered CTA/V and Cerebral A/V and they didn’t think I had significant compression.

While he is an amazing doctor, I didn’t go to Dr. Nakaji at that time because a. He was still in process of opening private practice b. He’s very selective and I didn’t want to waste time going through all the hoops again with possibility of rejection and c. I strongly felt God leading me to Dr. Hepworth.

So, I went to Dr. Hepworth for second opinion and he found that I definitely had styloid/C1 IJV compression, amongst quite a few other things.

He said my ear bones were dry and that was good. We haven’t talked about SSCD much as the focus has mainly been on getting me decompressed. I just had Styloidectomy/IJV decompression side 2.

If my lifelong, constant, high-pitch tinnitus is still this bothersome at follow up in November, I’ll ask him for advice from there. I don’t think I have any other symptoms of SSCD, but I haven’t researched it much. Like I don’t have strange, internal head noises other than the tinnitus and an occasional, horrific, low, blown-speaker sound in my left ear sometimes when I sing, play trombone, or am around very loud stuff like concerts. I was a Band Director for 31 years, and an original, 1980s Walkman user (Heavy Metal!), so who knows what damage is just from that. Thank you for letting me know about Dr. Stevens and Dr. Deep at Barrow/Mayo. If I need to go that route, I don’t think getting a referral is going to be an issue.

I do have plain CT of head/sinus bones a CTM of cervical spine that just covers TB area, and two CTA/Vs. Is CT of temporal bone a whole other specific scan? If so, I mean… I should already be a freaking glow stick, so what’s one more? :laughing:

I do see interior vertebral venous plexus engorgement wrapped around my vertebral artery at C1/C2. Never reported, but when I asked, Dr. H confirmed it and something about much-needed radiologist training. If that doesn’t resolve with this surgery, I may very well go to Dr. Nakaji and get his thoughts. My daily symptoms come with a lot of possibilities (CCI, venous malformation, CSF venous fistula, etc.) and not a lot of money to pursue them.

For now, I’m all about focusing on healing from this surgery and praying daily that this is the thing that gets my blood/CSF flowing properly!

Prayers up for you, my neighbor!!! :folded_hands:

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@Isaiah_40_31 and @tguerin18 I totally just remembered this! I have a friend who had SEVERE SSCD, with crazy delicate surgery, back in 2017… and was healed. I just found his email about that. Here are a couple things he wrote:

“My SCD was improved by going into my skull with a Surgical robot and rebuilding my inner ear using skin, cartilage, and bone grafts. It was major.”

“Dr Jennifer Maw. She’s an ENT and an engineer. On staff at Stanford. In 2017 the procedure is new, but I think it’s more common today.”

Hope this helps!

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