Help with diagnosis.

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Hi everyone! I’ve found a lot of solace in this group while desperately searching for answers. Unfortunately, after finally finding a surgeon I hoped could help, I was essentially laughed off with the comment, “Oh, you haven’t had a diagnosis? Why are you here?” He went on to order CT scans but never followed up, leaving me feeling completely defeated.

I’m 34 and have spent the last 18 months struggling with debilitating symptoms following a traumatic neck/ear injury during a 50ft drop into water.

Since then, I’ve experienced severe dizziness, head and ear pressure, visual disturbances, extreme brain fog, fatigue, neck/SCM pain, tinnitus, difficulty swallowing, and episodes of near-collapse. My symptoms are particularly triggered by turning my head left or extending my neck.

I’ve undergone extensive neurological, ENT, vascular, and endocrinological investigations, and even had surgery for a confirmed perilymph fistula, but so many symptoms remain unexplained.

It was actually during a chiropractic scan that I first noticed my styloid process, as it appears to be located exactly where I experience pain. It doesn’t look particularly elongated, but I’m concerned that my C1 transverse process may be unusually prominent and potentially affecting the surrounding structures.

My subsequent CT described stylohyoid ligament mineralization/calcification (2.6 cm left, 1.9 cm right), but I’m unsure whether the relationship between my styloids, C1, and surrounding soft tissues has been properly assessed.

I’m attaching some CT images and would be incredibly grateful for any thoughts or similar experiences. Has anyone experienced significant symptoms with relatively short styloids or a prominent C1 transverse process, particularly when turning their head? I’d also love recommendations for specialists who understand this anatomy and possible positional compression.

Thank you so much. :heart:

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@ScarletCat - Your left image shows pretty severe compression of your left IJV. The middle image didn’t upload completely so please try that one again, and your styloid is quite long in the image on the right. It looks like you have a decent amount of space between your styloid & the transverse process (tip) of C1, but that space can minimize w/ head turning. It also appears the greater horns of your hyoid bone are very close to your spine which puts them in close proximity with your carotid arteries. Carotid irritation/compression can also cause some of the symptoms you’re experiencing, & it’s a bit more concerning than IJV compression as it can cause TIAs & other stroke-like symptoms. We’ve had a few members who had both.

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Dr. Costantino in White Plains, NY is closest to you & Dr. Liu in Livingston, NJ, is next. Both deal with ES w/ IJV compression so either one would be good to consult. They’re both booking initial consults toward the end of this year or early next year.

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I cannot thank you enough for your help! I honestly thought this looked a little narrow but no one detailed anything besides calcification.

annoyingly I had booked to see Dr Constantino for March but after the previous dr laughed me off, I just thought perhaps it was something else after all.

I will try and see him as soon as he is available.

I’ll try and figure out more images but really appreciate the guidance and to know I’m perhaps not crazy after all. :heart:

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Hi, & welcome to the site!
I agree with @Isaiah_40_31 's opinion on your CT images, and given your symptoms it’s definitely a good idea to get an opinion from at least one VES doctor; we do suggest that members get a second opinion if they’re able too… And if you haven’t already done that, you can ask to be put on a cancellation list with Dr Costantino and you might be able to get in a bit quicker?

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Hi Jules,

Honestly this community is exactly what I’ve been looking for. I normally have no energy and can barely lift my arms, but last night I lay in bed turning over and over the many times my neck has somehow caused me to be dizzy or cause a pulsing in my ears or anytime anyone has touched my neck (a recent chiropractic adjustment sent me over the edge) and now I know why my neck swells up and my eye feels like it’s bulging/seeing double!

I can’t believe I’m even hoping to have a diagnosis such as this- but any diagnosis to understand what could be causing these confusing symptoms it all makes total sense!

I’m so annoyed at myself as I had cancelled an appt with Dr Constantino for March of this year, and now I cannot see him until Feb 2027… but hopefully he may be able to help. I’ll try and see dr Liu as well. Now I’m off to get more imaging done and hope we can finally get a diagnosis.

Thank you all tremendously for the support.

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I am so sorry you are experiencing all these symptoms @ScarletCat! Welcome to the forum :slightly_smiling_face:

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It’s not a diagnosis anyone wants, but good to get an answer, especially if you’ve been fobbed off by doctors…

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Oh definitely! I have been crying tears of joy? Watching videos sent by Dr Constantino’s team. All my symptoms make total sense, especially the immense head pressure and neck pain and eye pressure and difficulties with my vision in my left eye, double vision and shakey vision… I always thought I had IIH but that was ruled out after a spinal tap.

So many doctors convinced me I’ve had anxiety, and even when I had difficulty swallowing and globus sensations and a pain in my throat, they said it was acid reflux, and the tinnitus and pulsing was due to that. Been a rollercoaster!

now I somehow need my PCP to refer my imaging prior to meeting Dr Constantino, but not sure how that works, hopefully they are able to write the script. Finger’s crossed!

thank you all for the well wishes and I am very interested in hearing your stories. :folded_hands::mending_heart:

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This video is amazing! This is provided by Dr Constantino’s team:

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@ScarletCat - You shouldn’t need a referral to see Dr. Costantino unless your insurance requires it. Not having to deal w/ a referral is one less step to think about.

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We have super similar symptoms. I was told I had acid reflux too and nope! Just horrible throat pain and swallowing issues from that nasty little styloid lol. I am only five days out from surgery but I have noticed some serious improvements already if that gives you a little hope!

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Omg!!! Congratulations!

I hope you are feeling okay. Which doctor did you end up with?

and honestly I don’t even have a diagnosis yet, but in my gut and heart I believe this is what I have especially because I spent the first 4 months thinking I had IIH and it was Diamox that gave me relief to my eye pressure, but sadly after a spinal tap it revealed I actually have low-ish CSF pressure but no CSF leak. It’s been a mystery!

but the whole positional aspect and when I turn my dizziness increases and the fact o have a numb half face! So weird.

isheep- would love to hear how you found your diagnosis and how the surgery was for you?

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I’m all booked to see him for Feb 4! And I’m now trying to get all my certain scans together so meeting with my PCP this week to go over it all. Fingers crossed

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For my diagnosis, I think I fall in the “lucky” category. I had many doctors appointments and imaging done before I found my current ENT (Dr Brown) and he ordered my ct scan.

The radiologist reading my report put a note that he compared it to the previous several months of imaging / X-rays and noted that Eagles Syndrome could be the cause. At that point I never heard of it until I got the My Chart notification. A Google search landed me here lol!

I have been keeping a little post of my Post Op stuff mainly so I can remember the journey :slight_smile: . I linked it below for you. I feel pretty good today! We are here to support you and whatever journey this crazy condition takes us all on! :yellow_heart:

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@lsheep thanks so much for sharing your journey! Ah yes you definitely had the right doctors and support so they could identify your issue correctly! That’s amazing, gives me hope that there’s some good doctors out there!

I am looking forward to reading your journey thank you so much for sharing, and I really hope you are feeling okay today. What do they say about recovery? How long do they indicate?

:mending_heart:

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It does vary immensely, it depends on what nerves the styloids were irritating (as there might need to be more poking about to free the styloids which can cause some temporary nerve damage, some of the nerves are monitored to make sure they’re not under too much stress), the surgeon’s methods vary as to whether they cut through some muscles, or have to remove some muscle to stop IJV compression, and also whether the C1 needs shaving.
There’s info about surgery and recovery in the Newbies Guide, lots of post-op surgery stories on here which you can search for, and also on this site:
Styloidectomy Recovery: Timeline & Healing Arc

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It took me 3+ years to get a diagnosis but I do think the radiology report noting it saved me a lot of trouble.

@Jules linked a great resource. I had a styloidectomy but did not need a C1 shave.

Today is Day 6 post op and I am feeling good today. Even able to turn my head (gently) with no pain!

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So pleased for you @lsheep :hugs: :folded_hands:

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HOORAY! Your facial numbness makes me a little concerned you may also have carotid compression, but as long as the symptom doesn’t get worse, I think you’re fine. If you’d like to or can upload imaging, we can give you an opinion about what we see that could be helpful. Just make sure to block out your name & any other personal information on images you post.

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The facial numbness fluctuates a lot as does my eye pressure. At the early stages I had flashing lights in my eyes every time I blinked, and I described it was high pressure that my nerves were like hyperactive? I also used to have this buzzing all up my neck like I had nerve damage. This was immediately after my injury and lasted 3 months or so, was absolutely awful pain.

Today I live with base of skull pressure, neck pain and upper shoulder pain, sometimes pain that radiates into my clavicle and over time the whole side of my neck aches, and at one point I had an obvious lump there in my neck right where the c1 would be!

given my collapse in work last week, I abruptly turned my head left to look at my boss and this almost explosion feeling went off in my head, I’ve had this sensation about 4 times prior, very scary, and within 3-4 seconds I am completely disorientated, cannot respond to basic questions, even though I can understand, and the room is bouncing around and I have this complete state of panic. This time I had heat immediately around my neck and my body started shivering. My vision is just so blurry and it lasted about 1 hour. The heaviness, fatigue and brain fog is so severe and it takes me 4 days or so to come around completely to baseline. That’s actually what led me here to this group. I finally revisited all my scans, and I cannot get it out of my head now when I turn left my dizziness increases, and head pressure and I’ve been saying this to doctors since July 2025! Crazy!

I’d love to send more images but I have no idea what else to send. I have had a significant work up and all MRA and MRV appear normal…. Well I think so.

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