Eagle's? Hyoid? Tonsils? Help - Not sure what to do next

General
1

Hello everybody! I'm hoping somebody can help steer me in the right direction as I have had quite a journey up to this point and am at my wit's end (as I'm sure a lot of people are with these things).

I will try to keep this as brief as possible. I'm a 36 year old male. A little over two years ago I started having the feeling of something stuck in the right side of my throat. The feeling has always been in one exact spot just below the jaw joint on the right side. About an inch below right in the area where my neck transitions to my jaw. I also have intermittent fullness in my right ear. Those are the two main symptoms. I have no pain other than occasional feeling of a sore throat.

The symptoms have been getting progressively worse over the last two years to the point that now I have a constant feeling of something in my throat. Almost like there is mucus or something I need to clear my throat to get out but nothing ever comes out. Again this is only ever on the right side and always in the same spot.

The symptoms definitely get much worse after eating. Usually during or after eating my throat feels very tight like I am going to not be able to breath or start choking. Because of this I barely eat anything and have largely switched to drinking lots of Ensure.

The ear fullness seems to only occur after eating. It feels like a pressure fullness similar to when you need to pop your ears on an airplane. I've found that if I open my mouth as wide as possible and hold it open for a few seconds that general causes the pressure to pop and the fullness goes away, but then it will return within a few minutes.

These worsened symptoms generally continue for a few hours after I eat and then switch back to the constant symptom of just feeling like something is pushing in on the side of my throat.

I have been to numerous doctors trying to figure this out. I've had tons of MRIs, CT scans, EGD scopes, ENT scope (through the nose down the throat in office), multiple allergy tests (skin and blood testing) The only things that are ever identified are:

- small nasal polyp on right side

- deviated septum to the left

- some sinus mucus

- Eosinophilic esophagitis (may be just incidental finding)

- Very minor allergies to things like dust mites

- No food allergies identified on skin test or patch test but did show slightly elevated for wheat, barley, rye, and gluten on blood testing.

I have been put on high dose Nexium to see if it is acid reflux related, swallowed Flovent to see if it EOE related, oral steroids to see if it is somehow allergy related, multiple courses of antibiotics, Zyrtec, Allegra, Mucinex, etc. all to no avail. I also had a dental guard made at a TMJ dentist to see if it is all somehow being caused by jaw clenching and have been going to a physical therapist. None of these treatments seem to be helping things.

I had a swollen jugulodigastric lymph node removed on the right side about a year into this problem as we thought maybe it was push on things causing the issue. It tested normal and the symptoms did seem to improve for about a week but then came right back. The cause of the swollen node was not determined and I still have some smaller swollen nodes on that side but nothing that the doctors feel is concerning.

If you've read this far, thanks!

So here I am now and the symptoms seem to have gotten much worse in the last week. I constantly feel like something is in my throat and I am about to start choking. It is extremely annoying and making it so I am basically not able to function. I also have been waking up multiple times each night. I'm not sure why I'm waking up but I think it is just from feeling like my throat is being pushed on.

At this point I am strongly considering having my tonsils removed just to see if that by some miracle will fix the problem. Several ENT doctors have suggested that it could somehow be related to the tonsils even though they do not appear swollen. Of course they also caution me that the recovery from adult tonsil removal is not fun and there is no guarantee that removing them will help my problem at all.

I went to another ENT doctor recently for another opinion on the tonsils and he too suggested that I could give it a try at least to rule them out, but then he also mentioned Eagle's Syndrome and Hyoid Syndrome and suggested I look them up. So here I am!

My questions for anybody else who's been through this are:

- Does this sound like it could be Eagle's Syndrome? It is only on the right side, causing throat pressure/tightness and ear fullness.

- There is never any pain and the symptoms get worse after eating. Is that typical?

- What is the best test to diagnose this? The ENT doctor is sending me for a neck CT scan with contract both axial and coronal to both look at my tonsils and also check for Eagle's or Hyoid Syndrome. I always wonder if this is something that is easily picked up on or if the radiologist needs to be told to specifically look for it.

- Could these symptoms just be caused by something like bad posture or back problems?

- Does anybody have similar experience with tonsils that could cause these symptoms?

Thanks again for reading and for any insights you can provide.

2

What type of CT scan did you have? I had luck with a diagnosis through CT scan w/ contrast and a 3d ct scan. It is very difficult to diagnose eagle's without these particular type of scans. MRI's generally are useless, Panoramic X-rays can be beneficial but generally other types of x-rays will be ineffective.

As for if it sounds like eagle's, to be honest other than the foreign body sensation in your throat, it doesn't particularly sound like it. ( I am no doctor though). And this is the only symptom that I do not get from my ES, and funny enough they list it as one of the "main symptoms" in ES.

Eating generally makes my jaw and ES feel better, but this could be personal. I too have a severely deviated septum but it has never been brought up as a cause or contributer to my ES.

Welcome to the boards, hope you find some answers, uncertainty and lack of diagnosis was one of the worst parts of the whole process in my opinion. Good luck!

3

Thanks for the reply.

I've had several sinus CT scans without contrast to try and see if there is some sinus issue causing my problem. I've also had neck MRIs recently to see if there were any more lymph nodes, etc.

The latest ENT doctor has ordered a neck CT scan with contrast in both the axial and coronal position. He said that will be able to show any issues with the tonsils such as tonsoliths (stones) or possible bone issues such as ES. I am going to have that done next week.

Eating does generally relieve the tightness while I'm actually eating, but then it tends to come back worse either after eating or while I'm still eating.

It seems that I do not have one of the more classic ES symptoms of pain at all. This also tends to puzzle the TMJ dentist as apparently most people with TMJ disorders have pain as their main complaint.

It has been going on for so long that I am basically to the point where I'm fine having bad pain and a two week recovery from tonsil surgery just to rule out the tonsils or possibly fix the issue. Again though since my tonsils aren't really swollen or anything I'm not sure if that will help. My only hope is that somehow the tonsil is causing a problem behind it where it can't be seen through the mouth. I just hope that removing the tonsils doesn't somehow make things worse.

4

I was just recently diagnosed with Eagle sx after a year of progressively worse symptoms. My main symptoms at first were ear pressure and a feeling of ear fullness along with neck pain and muscle spasms. I also had a feeling of pressure in both sides of my throat. As time went on, my ear pressure became a sharp stabbing pain with chewing, talking, and swallowing. Now when I turn my head I get a sharp scraping pain and a sensation of traction in my ear. When the CT scan is ordered the doctor usually includes “suspect calcification of the stylohyoid ligaments”. You can always mention it to the CT tech or write it on the history they take before the scan is done. Your symptoms sound like Eagle syndrome to me. Good luck to you.

5


Yes I talked to a neurologist who stated basically "You deffinently don't have glossopharyengeal neuralgia, so it isn't really a neurologists field, but I will be happy to request a 3d CT scan that will scan specifically for Elongated Stylohyiod process" She talked to the radiologist who was doing the scan to make sure she looked at the proper areas. The result is shown above. Hope it helps

6

Do you know if the regular CT scan with contrast in the axial and coronal views would show it? That's what's been ordered at this point but I can call the doctor and ask about the 3D scan if that's better, although I might need to have the other ones done first just to check out the tonsils. Maybe they can at least see if there are signs of ES on the regular ones.

7

Personally I love my 3d ct scan, as most members know I post it everywhere, I also have a hard disk copy of the 3d scan which you can request to pick up 24 hrs after the scan. I have been told a regular ct scan with contrast works fine to confirm ES. I cant read a ct with contrast, but it is easy to see my issues with a 3d scan.

8

Does that view you posted show your problem?

Also, is this something that just starts all of a sudden or does it get caused by some event and then worsen over time? Whatever I have going on has been progressively worse over 2.5 years.

9

It does show the problem, if you look at it realize that my head is facing you, so the right side of the picture is actually the left and vice versa. You see the long bones that are separated in three parts on the right side of the picture (left stylohyoid) this is the side I had a poorly done surgery on, the left side of picture (right stylohyoid) seems to be in two parts, more than likely there is connective tissue between them and they just appear to be free floating as CT scans only show hard objects. On the disc I can rotate the view to look all the way behind my ears, or where my ears would be lol.

10

Sorry to answer the other part of the question, currently there is "no known caulse/ event that causes ES" Although some people report first having the problems, months to years after a tonsillectomy. And yes it does seem to get worse over time, at least that is how I interpret it, seems to be hard to deal with constant pain so maybe it is just my will weakening.

ThroatCrazy said:

Does that view you posted show your problem?

Also, is this something that just starts all of a sudden or does it get caused by some event and then worsen over time? Whatever I have going on has been progressively worse over 2.5 years.

11


Oh... well hopefully if I get the tonsils removed and it turns out that fixes my current issue I won't then get ES later from having the tonsils removed!

The only thing that I can think might be somewhat related to whatever I have going on is I had all my impacted wisdom teeth removed about 4 months prior to any of these problems starting and then I ended up having my bottom back right second molar removed about a month after I first noticed the ear symptoms.

12

Dear Throatcrazy,
The best thing you could do right now is to be diagnosed properly. Getting a Soft Tissue CT Scan with/without dye of the Neck is what finally showed my Eagles Syndrome.

13

Throat-Crazy, are your tonsils enlarged and inflamed? Going through a tonsillectomy should be a last resort. If you have Eagle’s you need to know how long the Styloids are & if they are bilaterally both extended or just one side, ect… You can find a good Eagle’s Specialist Doctor Spread Sheet on this website. Find the closest one or two and go see one! You need an Eagle’s Doctor to really diagnose you properly. Take care and I hope you find the help you need!

14


My tonsils aren't enlarged or inflamed that I can tell. It does look like the one on the right is just slightly larger than the left one and I can see a white spot on it (maybe a stone peeking through?). The thinking I get from a few ENTs is that my tonsil is right where I am pointing to from the outside of my mouth so they think I could take a shot and have them removed just to rule out one more thing since it's been going on for so long with no solution.

15

I have most of those symptoms but I have pain also. I have nerve pain when I have long rides in cars. I have pain in my lower jaw most of the time, last week it was so bad I thought I had an abscessed under one of my teeth. I almost went to the dentist, then it went away. I just had my 3d ct scan and I am going to the Cleveland Clinic next week.

I agree with getting the scans and the styloid length checked out. If it is eagles it only gets worse. I have been dealing with it for 15 years. Ten years ago I had disk replacement surgery for the problem that was no help. So just getting surgeries does not help. The docs are always willing to find something wrong and eager to operate. I agree with everyone on this board who says to take charge of your medical and make sure the docs do their job and if they won't go to another one. I wish I would have heard of this years ago.

16

My main symptom of Eagles was the feeling of not being able to swallow food completely. That and some minor jaw pain. I saw a voice and throat specialist in Colombus Ohio by the name of Dr. Arick Forrest who ended up doing my surgery. If you look for Emma’s posts you will find a list of doctors members of the forum have recommended. Hope you find some answers!

17

Throat crazy - my son is worse after he eats. He always has a pain spike in his ears after he eats. Sometimes ear fullness but mostly ear & throat pain. I think he has eagles but no docs on board. Elongated styloid processes showed on 2d & 3d CT scan.

18

Best testing that I am just new and learning is a panoramic view x-ray and 3D x-ray.

Go research someone that has seen it and done surgery. Many people it seems have surgery on lots of stuff, and treatments for things that are atypical facial pain. I have had may prior to a good diagnosis.

It is hard to find a good provider that has done surgery and seen . You might have to go a few states over life I am having to go.

U of Kentucky has a Dr Okeson that I am seeing as soon as I can get in.

I researched that Mayo Clinic in AZ has doctors.

My Oral surgeon only learned of in med school . He called every teaching hospital in NC and SC and no one handles. This is rare. 4 percent of population has some sort of elongated but no symptoms. out of that 4 percent break into down to 10 percent of the four percent . Only 4 persons have Eagles Syndrome.

That is what I read last night. So thankful to find other on Bens Friends. Go and research Mayo and U of K. That is all I can find. There way one Dr Earnest that keeps popping up but he does not see patients any more and I do not think he did surgery but" other Treatments."

I have atypical symptoms too. No throat issues but occasionally I choke on water. I have pain 24/7

19

I feel like I have exactly what you have. I was told it could have been Eagle's syndrome, however I have had a styloidectomy and calcified ligament has been removed and that did not change anything. I have had steroid injections in my throat and they haven't done anything either. I have had loads of CAT scans, MRI's, X rays, endoscopies and nothing has been found. I am completely at a loss and find myself taking Tramadol and gabapentin on a regular basis.