Hi everyone!
I’d like to know from everyone how they suspected ES or their doctor suspected ES and what would be symptoms that you didn’t think were related (maybe a resolution of them after surgery)?
Thank you!
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@GrnyAny posted a very interesting discussion about Vagus nerve symptoms which resolved after surgery, Dr Hackman was apparently surprised at these symptoms being related, here’s a link:
I had been told I should have my wisdom teeth removed as I had jaw ache, ear ache and aching glands below my ears for quite a few years, I refused as a dental hygienist didn’t think they needed removing & I wasn’t very keen on the idea! Anyway, since I had my styloids removed, I’ve not had this any more, so it was obviously the styloids and not wisdom teeth.
A member did a survey, I think back around 2014, into symptoms & there’s some ones there which aren’t so well known, here’s a link if you’re interested in that:
Survey Results - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
I was lucky and was diagnosed with ES my a dental clinic in hospital, it was spotted on a panoramic x-ray: I’d never heard of it before & in researching it I found this site. But quite a few members now are using AI to look at their symptoms & that’s coming up with ES as a possible diagnosis for them, & are then going for imaging to confirm it.
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For me, the only thing that lead to my Eagles diagnosis was the radiologist flagging it on my CT scan. I had never heard of it before! I have had my most significant symptoms for three years (dysphasia, ear pain and throat pain). It took many doctors and appointments to get to my diagnosis.
My surgery is scheduled for October 28th. I would definitely consider it a success if it resolves the swallowing issues. Hoping that’s the case. 
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Thank you Jules for your thoughtful links.
The first post definitely resonates with me
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Did you have a regular CT or one with dye?
I think I’ve only had a regular CT at the time for my migraines
I am wishing you the best with the surgery!
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With the dye, I was a little nervous about it but it turned out totally fine and wasn’t as uncomfortable as I thought it would be.
What are your symptoms?
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@Mitchmunchies -
My earliest ES symptom was choking on food to the point of needing the Heimlich Maneuver to save me. Had an upper GI thinking something was wrong with my esophagus but it was clear. I also had swollen submandibular glands but no illness that should have caused that. One other oddball symptom was the feeling that the roof of my mouth & surrounding gums had been burned as with hot water. The sensation would last for an hour or so then disappear. I haven’t had that again since my styloids were removed.
I haven’t had any severe swallowing problems or swollen glands since my styloidectomies.
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I am working on a diagnosis :(.
Thoracic Outlet Syndrome is also being investigated but I have certain symptoms that could be explained by TOS but seems more likely with ES based on my readings.
A lot of my symptoms got worse or appeared after I got in a car accident in June 2024 :(.
Symptoms before accident:
Daily headaches with episodic migraines with nausea as the presenting feature. Felt mostly in bilateral temples.
Raising arms or using arms resulting in arm weakness (for example brushing teeth).
I can’t tell if I have visual snow but I do see faint white dots in my visual field.
Tightness in bilateral trapezius and neck.
Exercise intolerance. I would get a massive headache and fatigue that I would have to lie down for 1-2 hours to recover.
Heat intolerance
Fatigue
Symptoms after accident:
I’ve been doing physio and massage since the accident religiously weekly and I am not getting better. Getting more symptoms
Numbness in fingers and feet.
Raynaud’s not always triggered by cold
Random electric shocks or water sensation on my face and now hands
Pain in neck, trapezius, arms, shoulders
Now lower back and hips, jaw, upper and mid back, check tightness
Crepitus on left neck when side bending usually can get 2-5 cracks a day
Thought this was wisdom teeth relating but now I’m thinking again. May 2025 extreme jaw pain and nausea that I had to lead work midday. My surgeons at the time before this pain thought I had at least a year before they needed to come out. When I got them out, the pain and nausea reduced greatly but bottom gum area where the wisdom teeth were are still sore when I press on them
I grind my teeth but when I use the mouth guard, I get more pain in the mornings
Nauseous most days, lack of appetite
Jaw clicks now that disappear after I open my jaw about 3-4 times and when come back moments later.
Shortness of breath while at my desk. Shortness of breath while talking and walking.
Hoarseness in my voice and like someone is strangling me if I talk too much or short or sing loudly
Think I’ve covered it all.
Thank you for such a supportive community. I have never felt this heard and supported before and that is thanks to all of you.
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I’m glad that we can be a support for you !
Hi Isaiah,
That sounds terrible.
I definitely choke on food too but I chalk that up to me not paying attention or talking while I eat. That must have been scary for you.
I can’t relate to the hot water but my mouth definitely feels tender and certain spots can get tender without a lesion. I often chalk that up to a canker sores brewing because I am sadly prone to those.
I’m glad the surgery went well for you :).
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@Mitchmunchies - I know there has been some discussion about your symptoms & possible causes, but I’ll go over some of those again here:
These sounds like IJV compression symptoms
This sounds more like a TOS symptom, but we’ve had members who’ve had similar symptoms that resolved once the styloids were resected so could be related to the spinal accessory nerve being irritated.
These are most likely symptoms of an irritated spinal accessory nerve. Chest, lower back & hips could be affected by muscle tightness in the upper back & shoulder muscles.
All of these except Raynaud’s would most likely be related to vagus nerve irritation. Raynaud’s could be, too, but the others I can suggest w/ greater confidence. If you have IJV compression as I suspect, then your vagus nerve is likely getting squashed, too, as it sits right alongside the IJVs within the carotid sheath up close to the skull base.
I hope this review is helpful. Knowing what the styloids are irritating & which nerves can cause the symptoms a person has can be helpful in pursuing a diagnosis as well as getting interim pain relief from nerve pain meds, ice, etc.
Neck crepitus & jaw clicking are common w/ ES.
Electric shock sensations are one of the many manifestations of nerve irritation or injury. Water sensation can also be among the sensations irritated nerves cause. Since you’re feeling those in your face, it’s most likely from your trigeminal &/or facial nerve being irritated as these two nerves are commonly affected by elongated styloids/calcified stylohyoid ligaments.
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Thanks Isaiah,
I do not even know how to thank you guys enough for such knowledge. I have another question that is related to weird lumps and bumps I got after my accident that were not diagnosed and nothing I’ve experienced before.
Shortly after my car accident I developed this hard lump at the right bottom of my skull posteriorly. No one could tell me what it was. It has reduced in size but when my physiotherapist dry needled my sternocleidomastoid (SCM), it flared and got very big again but resolved again. On the same side, I had a squishy bump at the cervicothoracic junction that appeared during early injury. It did go down eventually but these two were very strange.
Any thoughts on that?
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I can speculate that the lump near the bottom of your skull could be a lymph node. We have those all over in our necks & even in the area around the skull base. It doesn’t always require an illness to make them reactive. As I mentioned, I had swollen glands (lymph nodes) as a result of my styloid elongation. It’s possible, if that’s what your lump is, that it’s a response to your styloids or possibly vascular compression if you do have that.
The soft lump at your cervicothoracic junction could have been a small area of fluid retention from the accident injury or a deep bruise. I’m glad it’s gone now though.
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These all seem to make sense and is so difficult because these symptoms seem to all overlap with TOS.
Certain things like the roo test, I think are specific to TOS especially when I feel pain and tightness in my 4th and 5th digit. It just gets overwhelming and scary because I’m currently pursuing that diagnosis and wonder if I’m down the wrong rabbit hole.
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