Throat issues, possible Eagle Syndrome, looking for advice

General
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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.

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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:
https://forum.livingwitheagle.org/t/doctors-familiar-with-es-countries-outside-us/4753

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

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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!

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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!

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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.

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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:

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The letter has come through for my CT scan which is at the end of August. They’ve sent me for a ‘CT of neck with contrast’. Really not keen on the idea of contrast dye and I’m not sure it’s needed in terms of what needs to be seen that is causing my throat issues.
It’s a restriction/immobility of movement of some of the cartilage involved in swallowing it seems. Its as of when I initiate a swallow rather than all muscles and ligaments moving freely, everything just clenches tight and cannot move freely and sometimes there is a click where cartilage is catching when moving.

Are they even going to see this issue. with just a still image of my throat? I’m not sure I really have eagles or stylohyoid issues as my problem feels right at the back of the mouth at the top part of the swallow.
Is there any real need for contrast dye?
As I say I’ve had an Mri and video fluoroscopy before which doctors claim were ‘normal’ so I really want to get this one right and find out what’s going on. Also does anybody know if a standard CT scan like the one of the neck that I am being referred for can be made into a 3d image? As I think that may be what I need for the docs to actually find the problem and see what’s going on with the cartilage.

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Firstly a standard CT can be made into 3D- there’s software that can do that. We have links & info about that on here, lots of members have done it themselves.
If you don’t want a CT with contrast, it’s up to you- it’s used for vascular ES, so if you don’t have any vascular symptoms then maybe not needed. But I suggest you get it sorted/ reordered before you go to the appt or there may be a mix up or they may not do a standard one.
I would have the CT done though as it may be you have calcified ligaments- a click when swallowing is one symptom. You need the CT to show right down to the hyoid bone to also check if the hyoid bone processes are normal size too, & check that these will be measured, as well as the stylohyoid ligaments checked for calcified ligaments, plus the SPs measured…before you go if you can? A CT won’t show what’s going on when you swallow, but should give you an idea of if there’s anything going on with the structures. (Some members have had swallow tests done, but that doesn’t very often show anything either, even where there’s known problems!)
Let us know how you get on!

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Thanks Jules.
It’s a tricky one as I don’t know if I have any vascular symptoms as such but everything is bunched up and tight in there it seems.

In terms of rearranging the CT and there being any mix ups, if its a neck CT it can only be a standard one with contrast or a standard one without contrast right? I’m not sure what you meant by getting it sorted or it might not be a standard one?

It’s incredibly difficult to communicate with the consultants at the hospital. They send you for the scan then you are just left with the phone number of the part of the hospital that does the scan who have no idea of your issues and just do the scan the consultant has asked them to do, without any specifics I imagine.

I did email my consultants secretary explaining my symptoms specifically again and suggesting I have a CT that would show ligaments and tendons most clearly and it be able to be made into a 3d image. Who knows if they will have taken that into account.

Also you said check that they will check for calcification of ligaments and measure the SP’s before I go? I’m not sure there’s much hope of them being that specific before the scan but isn’t this something I can discuss with the consultant when I go back for my scan results?

Sorry for so many questions.

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Apologies, I forgot you’re UK too; it seems to be easier in the US to query what scans are ordered etc. Sorry if I wasn’t very clear; by standard I just meant without contrast. Hopefully you’ll get the chance to talk to the radiographer before they do the CT & can just check that they will do right down to the hyoid, you might get the chance to ask about getting measurements done & that they’ll look for calcification. And hopefully the message will get through from the secretary to the consultant so if they need to specify getting measurements then there’s time for that. Some consultants measure their own, & some just look at the general length to judge what structures might be getting affected. Hopefully that will happen, it’s just occasionally all that comes back from radiographers is a standard ‘nothing unusual seen’ or ‘styloids look normal length’, when more specific info is needed. But as you say, you should be able to ask all this with the consultant at your next appt. Hope it goes okay!

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I have my CT scan in a couple of days time.

It’s booked in as a CT of neck with contrast but I’m still really unsure about having the contrast and I’m not sure if I need it. I will speak to the radiologist and see if it might be OK to do the scan without the contrast.

Either way I hope and pray this scan shows what is causing my symptoms and we can find a solution.

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Hope so too, let us know how you get on, with or without contrast…

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Here in the US the radiologist would have no “say” what test to do. He/She would have to follow the exact order of your doctor. I walked in to the radiology center with a piece of paper signed by my doctor that was an order for a “CT of neck without contrast” and there was no discussion after that. I never even saw a radiologist - just a tech and I was out the door. The radiologist read it later and sent the findings back to my doctor. I went back up to the imaging center myself and got a copy of the paper findings and CD for my own records.
Just one person’s experience here :slight_smile:

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I think in some cases it would be similar here with the doctor requesting the scan with or without contrast and the radiologist just carrying out the scan.
I did ring the hospital where they carry out the scan and said I’m not too keen on having the contrast dye and I’m not sure if I need it in regards to what they are looking for on the scan anyway. They said I will be able to speak to the radiologist on the day. Usually they would have to speak to my consultant/doctor if they were to do a different version of the scan to the one requested but depending on what the radiologist thinks they may be able do it without the contrast.

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Here in the US the technicians/nurses/person in charge will ask if we are allergic to the contrast. Maybe you can say that you are and hopefully they will proceed with just the CT without contrast. I looked at my records and would have thought that my CT was without contrast, but my memory failed me. My CT was with contrast and it was how my ES was diagnosed with vascular issues. Good luck.

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Did the fact you had contrast help towards your diagnosis then do you know? Or would you have still been diagnosed with the standard CT without contrast?

They did give me a form with questions regarding medications/allergies that I will take with me on the day. I said to the receptionist on the phone I do have some allergies and food intolerances as it said to ring if this was the case, but she didn’t seem fussed.
I wouldn’t know if I’m allergic to contrast as I’ve never had it before.
I’ll just have to go with what feels right on the day I suppose. Just feeling rather anxious about it! Not worried about the scan itself but the idea of the constrast does freak me out a little.

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CT without contrast would show the bones. The contrast shows the vascular system. If you think that you have vascular related ES then the contrast would be helpful.

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The only way to see if the veins or arteries are being pinched is to have the contrast…sorry