Eagle Syndrome - Online Support Group

Throat issues, possible Eagle Syndrome, looking for advice

Hi all, I stumpled across this forum while looking for answers/solutions to my throat problems. What a wonderful supportive site this is and I really hope some of you may be able to point me in the right direction or have some ideas on what I might be dealing with.

Around 5 years ago I developed pain in my throat when swallowing with a general swelling over the thyroid and throat cartilage. I then developed clicking when swollowing. It wasn’t overly painful and it didn’t bother me much at first but then for a breif period it became excruciating to swallow, but it always felt as though the pain was outer throat and something to do with my throat cartilage rather than it feeling like a sore throat at the back of my mouth.

Then one day after a long sleep I woke up to what felt like a completely numb throat, as in no sensation at the back of my throat when swallowing. It was as if my throat cartilage was now jammed stuck and not able to move freely when swallowing. This was a horrible sensation and drove me crazy.

To this day around 4 years on from when my throat went numb or my cartilage stopped moving freely, I am still struggling with this issue.

With my head in certain positions my throat clunk’s/clicks as though it is clicking past something in the throat. This happens more frequently when my head is tilted forward. If my throat does not click when I swallow it feels as though there is just a contraction/clenching of the Swallow muscles but everything just clenched together rather than the usual up and down free motion of a regular swallow. Imagine clenching your first as hard as you can, it’s that kind of sensation in the throat.

I feel as though there may be thickening of the stylohyoid ligament in the right side of my neck as I can feel the ligament when I put my fingers there where as on the other side I cannot feel it.

I have had the usual camera down the throat, Neck mri, videofluoroscopy and none of them show anything that isn’t normal according to the ENT docs. The doctors at this point aren’t recommending much else. I’m debating a CT scan but is that going to show anything else that wouldn’t have been seen on my current scans?

I’m not sure if what I have specifically matches Eagle Syndrome but it sounds somewhat similar and there is definitely an issue with the throat cartilage and swallowing.

I really hope somebody has some ideas on what this could be. Is it worth me getting a CT scan or is that just dosing myself with more radiation to not find anything different than the mri or the videofluoroscopy? If so what type of CT scan is best to show ligaments as well as bone? As I know there is with and without contrast, fine cut etc. I’d rather avoid contrast if possible.

There are many other symptoms I have which I feel are in some way related. Blocked feeling and ringing in right ear. I have also developed something similar to diabetes insipidus (not sugar diabetes) which I also think led on from the throat issues but that’s another matter and to complex to go onto here.

Slightly lost as to what to do. Any advice would be greatly appreciated.

Hi Callmestar1!

The symptoms you’re describing sound very suspiciously like a calcified stylohyoid ligament. When the s-h ligament(s) partially or fully calcify, they tether the hyoid bone on one or both sides depending on whether you have bilateral or unilateral calcification. The hyoid bone needs to move freely when you talk, swallow, breathe, etc. When the hyoid is tethered by a calcified ligament, obviously it can’t move as it needs to & the result is the click/clunk you experience & even potentially the tightening of throat muscles as they try to compensate for lack of hyoid movement. You have been a good sleuth in noticing that you can feel the ligament on the right side but not left, that the usual up/down motion of swallowing seems inhibited, & also in observing that symptoms are worse when your head is in certain positions. There are several cranial nerves that come out of the skull near the base of the styloids & run through the area of the neck where the styloids & s-h ligaments are. Irritation of these is the common source of ES symptoms. Your throat numbness/contraction is most likely coming from an annoyed vagus nerve. The ringing in your ear could be from irritation of the trigeminal nerve or another cranial nerve affecting that area. Though I haven’t heard of ES causing diabetes insipidus (with which I am familiar), it’s not impossible that your body is sufficiently stressed by your current condition that it is now responding with bigger problems.

Eagle Syndrome is defined as 1) elongation of the styloid process(es) OR 2) calcification of the stylohyoid ligament(s) OR 3) a combination of #1 & #2. The best diagnostic tool for ES is a CT scan without contrast. It will need to be of the area between the skull base & the hyoid bone. CTs w/ contrast will show the soft tissues better & are best to detect vascular compression caused by ES. In your case a plain CT scan would work as your symptoms don’t currently sound vascular in nature. Of the other scans you’ve had, only the MRI could possibly show if your ligament is calcified, but someone “in the know” would need to look for that specifically & make an evaluation. MRIs are best for showing soft tissues, however. CT scans are best for all things calcified/solid tissues. Your biggest problem will be finding a doctor in your area who knows about ES & understands the best course for surgery to correct it. We’ve had several people from London on our forum in the past couple of years most of whom have traveled out of area to see Mr Axon or others listed on our Doctors’ List. You can use the search icon to find more information regarding doctors in London area who might be able to help you.

Here is the link to the Doctors List for doctors outside the US:

I hope this info helps you!
:sunflower: :blush:

Hi & welcome!
If you can get referred for a CT that does show the styloids best, & any calcified ligaments, more radiation yes, but it would rule it in or out! (Btw an MRI doesn’t use radiation so that’s one scan to worry about!) If you can get referred for one, it’d be helpful if they did your neck from skull base down to the hyoid as it does sound like the ligaments could be calcified & locking everything up. With contrast shows the blood vessels if vascular ES is suspected (info about symptoms for that in the Newbies Guide).
If you search Sewmomma’s posts she had a similar sounding clicking problem to you; she’s just had surgery. Sorry, I’m on my phone so can’t give you the link!
Also quite a few members have had swallow studies done, it doesn’t often seem to show anything even when people have a struggle with swallowing!
There’s also a consultant in London on the list, Mr Jonathan Hughes, as well as Mr Axon, but Mr Axon’s the most experienced UK doctor that we know of.
Hope this helps a bit!

Isaiah, Jules, thank you so much for your responses, its so nice to see people going out of their way and giving their time to help people :slightly_smiling_face:

All of the information you have provided is very useful. I have left a voicemail with my ENT doctors secretary about sending me for a CT scan. They did send me for one before but in the end I cancelled it as I couldn’t see it finding anything different and I had kind of given up. So hopefully they won’t take to long to send me for a scan again.

If I don’t have any luck with my current ENT doc I will try and get in touch with some of the doctors you have recommended.

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Good luck!

Hi! It took me 9 months to figure out why I was having a click with each swallow - I can’t imagine living with it for years like you’ve had. It was my hyoid being pulled by calcified ligaments and causing the hyoid to snag/catch on surrounding structure. It was terrible. Both ligaments are now removed (3 cm from hyoid up) and it’s all better. That CT scan should show what’s going on :+1::butterfly:

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Hi SewMomma, I’m glad things are better for you now.
I really do hope the CT scan shows what’s going on.
I’m not 100% sure but I don’t think my issue is to do with the hyiod. It feels as though the issue is right at the back of the throat and my hyiod seems OK. I could be wrong.

The back of my throat felt “open” when all this was happening and now it feels “sealed”. Everything is so compact in the area, when something is a little bit off here and there, it is felt in and around the whole general area. It can be a very mysterious condition. :unamused: