How to conclusively test for/rule out ES?

General
1

Hey there everybody, new user here, hope you’re all doing well.

Short introduction: for the past 2 years I have been suffering from debilitating chronic pain in the right sides of my neck, face and head. (Full list of symptoms further down) I have been to neurologists, neurosurgeons, dentists, ENTs, maxillofacial surgeons, and a muscoloskeletal physician. Had numerous MRIs on my brain, spine, face, and soft tissues of the neck, plus a CT scan on my sinuses and a few x rays on my teeth. Nothing has been found. No tumours, no MS, no TMJ, no unerupted teeth, nothing. At this stage all I have to go on is my dentist insisting that he still thinks it’s TMJ dysfunction (despite none of my scans showing anything wrong with my jaw) so I am skeptical that he is just trying to push me into an expensive treatment plan. TMJ also does not explain the throat pain which I am almost certain is causally related to the pain in my face, ear, and head.

I’ve known about Eagle Syndrome for a while but it was so rare that I never bothered looking into it further. However, it is now clear to me that whatever I have is not common, so I am having to revisit the rarer conditions I initially dismissed out of hand and start taking them more seriously.

I have long suspected that my right carotid artery is involved as the pain in my neck is right on that area. I had an MRI on the neck (neutral position) which came back negative on carotid artery compression. I thought this was good enough but now I am uncertain as to whether I should get another scan with my neck elevated and flexed at different angles.

I feel that my symptoms line up with those common in ES and the next logical step would be to undergo scans to rule it out. I would like to know which imaging tests are most accurate for this.

My symptoms are as follows:

  1. Feeling of lump in right side of neck, around the top right side of my Adam’s apple. When I swallow I can feel this area being tickled or irritated. Sometimes I can feel it ‘click’ or pop when I swallow, which confuses me. Turning head to the right is uncomfortable and very, very tight on this area.

(side note: strangely, eating food and drinking water can alleviate the pain briefly. I don’t know if this is due to swallowing things and briefly moving something in my throat away from something else? That’s the best I can come up with. However, if I eat things that are too hot or too cold the pain is usually worsened. Swallowing cold food, for example, I can instantly feel the cold radiating up to my right ear, where there is normally pain.)

  1. Intense and chronic pain in the right side of my face, specifically the cheek. Feels like there is a lot of throbbing pressure in this area. Also this side of my face is visibly more ‘swollen’ than my left side.

  2. Pain deep inside my right ear. Not sure if this is the eustachian tube as scans have not shown any blockage, and the pain and popping sounds feel much deeper than the common popping you get when you’re on a plane. However it does ‘crackle’ a lot as though it is blocked and feels intimately connected to the pain in my neck. (The ear pain used to be MUCH worse, and I could reliably pop it by pushing my tongue against the floor of my mouth.

  3. The pain from my face goes up to my right temple and side of head also. Again, lots of intense pressure and throbbing.

  4. Occasional, but not infrequent, aching pains in my right eye and just above it on my forehead.

Generally I feel very sluggish nowadays.

I know this is a long winded post (sorry) but a couple more questions if anyone is able to help: are there ways to personally test if I have ES or at least give me a better idea? Can I feel an elongated stylohyoid ligament or styloid process just by touch? I’m not sure where they are exactly and the rest of the internet hasn’t been very informative.

Also, any other advice on this would be very much appreciated, I’ve had this for a long time but getting repeatedly wrung through the medical system is getting more and more exasperating so if there are any tricks to make it easier it would be a huge help. Thanks everybody.

2

Hi, and welcome!
Some of your symptoms sound like ES- in the Newbies Guide there’s lots of info, including some common symptoms, and what might be causing them. Because the styloids are in a very cramped space in the neck, they’re close to major blood vessels and nerves. So for example eye pain can be down to the styloids or calcified ligaments pressing on the carotid artery, or the styloids compressing the Trigeminal Nerve and causing pain. Pain in the temple could be again by compression of the Trigeminal nerve, and if the styloids are compressing the jugular vein, that can cause a pressure feeling etc.
With a lot of members they have the usual/ common symptoms, but then extra odd ones as well. One member organised a survey a while back so there’s the results of that in the Newbies Guide which might be interesting for you to read.
Also an MRI is not generally the best scan for diagnosing ES as it shows soft tissues more rather than calcified areas, so a CT scan is the ‘best’ for diagnosing ES. And if you’re able to get a CT with contrast, then that will show compression of blood vessels, although only in a neutral head position. Some members have also been able to get a Doppler ultrasound to check the blood flow in the carotid arteries as well. But if you’re able to get a CT done, make sure that the radiographer knows to evaluate it for ES and to look for the length and angulation of the styloid processes, and to look for any calcification of the stylo-hyoid ligaments. Also it might be an idea to look at the hyoid bone, as sometimes people have had issues with larger than normal hyoid cornu bones, which can compress structures as well.
The styloid bones can be felt beside the tonsils sometimes if they elongated or angled, and if you get worse pain if you push on them, then that seems to be an indication that there’s your problem- not that doctors believe that though!!
I think that you’re wise to be a bit sceptical about the dentist pushing TMJD; it would be sensible to get some other things looked for before you start paying out for that!!
Hope this helps a bit!

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Hi Jules, and thank you for the helpful response. I am currently scouting some ENT practices to see which have had experience with ES. So far they all say they know what it is but I am not sure if this is enough. I’ve already spent a ridiculous amount of money on private doctors and want to get the necessary scans done in the shortest time possible. Are there any questions I should be asking them to get a better understanding of their experience?

You mentioned that I can check my styloid by feeling the back of my mouth? Could you guide me through this? I can’t find anything else about how to do it.

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Oh, one more thing – if my carotid artery or any veins are being compressed, does anybody know if there are neck positions that can give some relief? I’m worried that I could be at risk of something more serious.

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Hello, My pain was caused by ES but I also have TMJ. It appears that my trigeminal we’ve was damaged and the calcification was pressing into my nerve. My pain included pain in my ear, temple, teeth gums and even pain in turning my head. I learned that since I went misdiagnosed for so long the pain expanded and I work daily still at unwinding the pain several years after successful surgery. I wear a very specialized bite plate not made by an ordinary dentist, eat healthy, have special treatment weekly for my neck and jaw. I still can get my self in pain if I lift heavy objects or use a computer. Sometime pain starts for one reason and continues for other reasons. Good luck in your journey.

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Hey Ann, thanks for the response. Sorry to hear that you’re still in pain – how long did your condition go undiagnosed for?

When you say calcification, where do you mean? I’m still in the early stages of learning about this. And did your TMJ contribute to the pain at all?

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I went misdiagnosed for 6 years…Eagle Syndrome is the calcification or hardening of a ligament which elongates.i never had TMJ issues before my pain started but wound up not even being able to move my neck or look up with out triggering the pain. I can move more freely now but still have to be careful. I learned that posture is very important to my pain. I can no longer have weight pressing on my shoulders…someone leaning on me…lifting a baby causes pain or even a bathing suit tied around my neck…my nerves are still settling down after my experience and I would also watch how you use your computer and phone .

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Some members have found if they put one finger to the back of the throat around where the tonsil is, sometimes they’ve been able to feel a bony lump… the exact position is variable depending on the length of the styloid. Some members have felt theirs under their jaw otherwise. It’s not like a diagnostic thing, just that people have been poking around where they get the pain and found a lump!
Calcification can happen either in the stylo-hyoid ligament, or the styloid process can become more calcified, thicken and elongate. Or sometimes people just have longer styloids than the average, like people might have longer fingers… Doctors don’t know always the cause, but it can be from trauma to the neck, metabolic disorders, or ageing affecting the ligaments.

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Forgot to answer your question about the blood vessels. Often if the arteries are compressed, people might get dizzy or even faint if their head is in a certain position. It varies with people depending on the angle of the styloid, so it’s a bit of an individual thing. If the veins are compressed, then you can get the pressure feeling in your head and ears, as well as dizziness. Laying flat on your back isn’t good at night, it’s best to try to prop yourself up wuth a wedge pillow or something like that. (You might notice a headache in the morning when you wake up if you lay flat).
Hope this helps a bit- there’s more details on vascular symptoms in the Newbies Guide section.

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Thanks Jules, I am now devouring the newbie guides, quite the goldmine of information this site is!

Apart from the symptoms I mentioned above there is one that I’m having difficulty describing. It is something like a creaking/crackling on the right side of my head. It happens rather frequently and tends to coincide with moving my head or swallowing. It feels connected to everything else, and I’m getting increasingly worried about it.

Does this sound familiar to you or anybody else? Sorry if this post is incoherent, I’m on some strong painkillers today.

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There have been a number of people who have been diagnosed w/ ES who have mentioned feeling popping or hearing cracking sounds when they turn their heads or chew. If the styloid has extended far enough it can absolutely be felt in your throat using your finger & thus could be mobile when swallowing & could potentially create the sounds/sensations you’re feeling. ES is an oddity from the standpoint that there are a variety of “standard” symptoms: sore throat, ear pain, jaw pain, eye pain, headaches/migraines, dizziness, neck pain & so on. However, it seems that there are also a subset of symptoms that can be unique to an individual - sometimes something that no one else has experienced but that goes away after surgery for ES thus allowing one to conclude that it was a related symptom even if it wasn’t “by the book”.
TMJD can also create the symptoms you have mentioned because when the jaw joint doesn’t work properly it makes all kinds of noises. Mine snaps, pops, creaks & even gets locked in the open position periodically although the use of a night guard appliance on my lower teeth while sleeping has helped to alleviate some of this.
I hope this info helps to allay your fears to some degree.

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Thanks Isaiah. Yes, the more I learn the less anxious I feel. 2 years ago the possibility of having ES would have seriously unsettled me, but at this point I welcome any diagnosis. Not knowing is by far the worst feeling.

I went to see a maxillofacial surgeon yesterday (through the public system so I was on the list for a long time) and mentioned ES. They looked at an older X-ray of my teeth which apparently picks up the styloids, and said that the right styloid is slightly longer than the left but nothing too alarming. That said it was an X-ray and not a CT targeting the styloids.

I have also noticed that applying pressure to my right styloid (assuming it is the hard groove just beneath my ear) actually recreates the ear pain and some of the headache pain I’ve been experiencing. This is probably a dumb question, but is it possible for the styloid to be pushed in too far rather than being too long? Or are there any other ways the styloids can cause issues other than elongation and calcification?

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If it’s at a peculiar angle, then yes, it can cause problems. There’s a research paper mentioned in the ES Info pages supporting this. Because it’s such a tight space in the skull base/ neck area, even a small angle can cause compression of nerves and/ or blood vessels. And we’ve had a couple of members who’ve had slightly elongated neck vertebrae processes as well, which has narrowed the space even more causing compression. Also sometimes the styloids can be quite thick, which can cause problems.
Unfortunately doctors use different ‘average’ lengths of styloid processes to compare as well, which doesn’t help- Eagle who first discovered this syndrome I think classes 2.5 cms as the average, but I have seen some reasearch papers where the doctors have considered anything from 1.5 cms - 4cms as an average! Obviously if you’re not a very tall person, and your SP is 4 cms, then it’s not normal for you, for instance!
We suggest here that members if they can read the research, and perhaps print off the research papers which help your case (like the one which mentions the angle giving rise to symptoms, or any which mention unusual symptoms that you might have etc.) and take those with you to appts. to help support your case if you’re having trouble getting tests or treatment.
But the max-fac docs were right, a CT is the best to show the styloids.

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Jules gave a very thorough answer to your question & I would like to add only one thing: I had neck pain that was annoying & after some probing around, I found a hard striated lump under my jaw kind of where lower jaw bone & neck meet (left side) that exacerbated the neck pain when I poked it. I thought it was an irritated salivary glands so went to my primary care doctor for confirmation. He thought it was an infected salivary gland so gave me an Rx for antibiotics (which I never bothered to take because I knew it wasn’t an infection). A month or so later I had an appt. w/ a differenct doctor who said the lump felt calcified, & she referred me to an ENT office where ES was diagnosed initially w/o a CT scan but I was sent for a CT scan which confirmed the diagnosis. This symptom & the pain I could produce by pushing on the lump under my jaw are very similar to your situation but differs only by location. I could feel my right styloid beneath my right ear but not under my jaw as I could w/ the left one.

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Yes it does!! You describe my symptoms perfectly. You’ve written my history, seeing all sorts drs / scans, took me years to be diagnosed but it didn’t really help. I had surgery right side five years ago, afraid didn’t help and I’m back to square one,
currently investigated hamulus bursitis? have a look at that, my most recent scan said styloud now >2cm so it’s grown back with possible scarring causing irritation, I feel I have a loose piece of bone stuck between my ear / throat / tongue, drives me potty. I wish you well, I’m going to show yr symptoms to my dr as you describe them so well! Regards, sue

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Hi Sue, I’m terribly sorry to hear surgery didn’t help you. I’m interested in the details of your diagnosis - how did the doctor/s finally identify Eagle Syndrome, and what did they do in the surgery? Was there any pain-free period after the op?

Sorry to bombard you with questions, just one more – since you’re still in pain, do you think that means Eagle Syndrome was never the real problem?

I’m doing some research into hamulus bursitis per your advice, it seems to be very very rare but I’m at the point where I can’t discount anything. Thanks.

I also came across an interesting report on a condition called “Patulous Eustachian Tube” that I think might interest you. It’s - again - very very rare but the symptoms listed match my own very closely. I’m adding it to the list of possible causes if Eagle Syndrome comes back negative. (The other conditions on the list are Hyoid Bone Syndrome, jugular vein compression, and TMJ.)

Edit - sorry, here is the report I read: https://www.google.com.au/amp/s/www.practicalpainmanagement.com/amp/398

Also it’s kind of amusing how the Patulous Eustachian Tube was found in the first place – the patient did their own research and suggested it to the doctor! Sigh… if only the doctors I’ve seen weren’t so quick to dismiss my suggestions like I’m a moron, maybe we could have figured this out a lot sooner.

How’s the pain for you now, Sue? Any improvements at all? Are you taking any medication to help?

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(Added a link to my last post)

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HI @Wonkly,

Welcome to the nest! I am one of the people that had both my styloids in my mouth which is how I was diagnosed so quickly. I felt like I had strep throat on one side and so I reached in to touch where the soreness was and felt a hard lump [bony-lump] one of mine was in the arch in above my teeth in front of my tonsils [yep still have them]. Turns out the other one was lower beyond my bottom left jaw below my tonsil. I have read about people who could feel the styloid under their jaw. I had the one-sided headaches and full head over heating type headaches. Feel free to read my post history by using the above search tool.

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Thank you, tomorrow I will put aside some time just to browse this site. My understanding of ES is getting better but it still quite scattered, I need to knuckle down and fill in the blanks.

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I found that learn about it came in need to know spurts. Starting with filling in the blanks sound like a good plan!