Update: Please tell me if this sounds correct

General
1

Hi everybody,

I posted a few weeks back wondering if I had Eagle's Syndrome. I have a few updates since last time and am hoping somebody can steer me in the right direction or at least give me some confidence.

Basically I've been having a feeling that something is stuck in my throat and also ear fullness for the last 2 years. Worse with eating.

Two weeks ago it seemed to get really bad to the point that I went to the ER twice because I felt like I was choking or couldn't breathe. Both times they said they didn't see anything but gave me something to numb my throat and that made the feeling go away. Since then I've basically just been drinking Ensure and not eating anything at all because I feel like my throat gets tight when I eat.

The ER took a CT scan of my neck with contrast and said they didn't see anything (because I think they are just looking for chicken bones or other things stuck in your throat). I took that CT scan to an ENT doctor today, the one who had suggested looking into ES to begin with, and he showed me on the scan how on the right side my styloid bone is much longer than the left. He also felt my neck and said right where I complain about the feeling of something stuck is the tip of the bone. If I push from the left side of my neck I can feel the lump that is causing the problem move on the right side which he said is because the bone is a U shape.

So I'm getting pretty excited that I may have come across the problem after 2+ years of ENT, GI, Cardio, Lung, etc. doctors doing every test they have on me and saying everything is fine.

Questions:
1. Does this sound like the presentation of ES? I can feel a small lump in my neck on the right side right where the jaw and neck meet. It moves up and down when I swallow and isn't present on the left side. CT scan shows no abnormalities such as lymph nodes or tumors in this area. Main symptoms are constant feeling like something is stuck in throat (worse after eating), hard to swallow, tight throat, ear fullness after eating, and waking up in the morning with sore throat and ear on just the right side.

2. Is this something that could have been getting progressively worse over the last 2 years or so? At first it was just a minor annoyance mainly after eating, but now it has become something that is impacting all aspects of my life. Just wondering if it somehow started growing too big 2 years ago and has just gotten bigger and bigger since then? Seems strange to me but maybe that's what happens. It started when I was 35 ad I'm 37 now.

3. Should I have any other imaging done? I've heard people talk about going to an oral surgeon for x-rays. I haven't done anything other than a standard CT of the neck so far but that seems to be enough for my ENT doctor to see that it is definitely longer on one side than the other.

4. Where is the best place to go for this type of surgery? Is the surgery pretty successful at fixing the problem? I actually already had a swollen lymph node remove from almost the exact same spot a couple of years ago thinking that might have been causing the sensation. It sounds like the surgery would be basically going right in through that same spot and reducing the length of the bone.

Thanks for your help!

2

Actually I believe what I am referring to is the Hyoid bone (the U-shaped bone). So this may be similar to ES but is actually Hyoid syndrome? My same questions still apply. It seems every time I look up ES or Hyoid syndrome the main symptom is pain, but I barely have any pain. My main symptom is I feel like something is in my throat and I feel like it gets much worse like my throat is tight or something is stuck after eating. If I stop eating then after an hour or so it feels "normal" again with just a feeling that something is there but not that something is stuck or my throat is as tight.

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ThroatCrazy - It does sound like Eagles, but it also sounds like you are confusing the styloid process with the hyoid bone. If one side is "longer than the other", then those are your styloid processes (to the best of my understanding). You should read as many older posts as you can I you will find answers to all your questions that you have asked. My son has been in pain for 5 years and yes it has gotten worse over time. Once the styloid bones calcify, they can continue to calcify and continue to elongate which may explain why symptoms get worse over time. As far as tests, I have been told that my CT is enough and that there is no one test for Eagles and that the only way to really know is to have the bone removed. There is a spreadsheet on this site with many doctors listed who are familiar with ES. You should start with one of them. Hope this helps get you started.

4

Thanks. I guess I may be getting confused. The doctor showed me on the ct scan where the U-shaped bone is actually longer on one side (more like a J-shape but not nearly a big of a difference between the sides). Would this still be ES? I’m not sure the relation between ES vs Hyoid Syndrome.

Also, would the feeling of a tight throat especially after eating point to this? That is my most troubling symptom. I may eat a few bites of something and then feel like my throat is tight like I will choke or won’t be able to breath so I stop eating. This feeling then lasts for awhile, maybe an hour or so and eventually fades away as long as I’m not eating. The strange thing is that it seems to be worse with some foods so that lead me down an allergy path but allergies seem to be a wild goose chase. Could it just be that items require more swallowing actions and that in turn is causing the ES/Hyoid to move more and cause more irritation to the surrounding nerves? Even just drinking will sometimes cause my ear to feel full which is why I’m thinking it is somehow linked to the swallowing action and not the actual ingredients in the food.



Ear Mom said:

ThroatCrazy - It does sound like Eagles, but it also sounds like you are confusing the styloid process with the hyoid bone. If one side is "longer than the other", then those are your styloid processes (to the best of my understanding). You should read as many older posts as you can I you will find answers to all your questions that you have asked. My son has been in pain for 5 years and yes it has gotten worse over time. Once the styloid bones calcify, they can continue to calcify and continue to elongate which may explain why symptoms get worse over time. As far as tests, I have been told that my CT is enough and that there is no one test for Eagles and that the only way to really know is to have the bone removed. There is a spreadsheet on this site with many doctors listed who are familiar with ES. You should start with one of them. Hope this helps get you started.

5

You are definitely in the right place.

The styloid is up near the ear, sometimes it elongates. Someone else may be able to give a medical explanation,but I know my stylohyoid ligament was also ossified or calcified and was attached to the styloid. I am not sure if they are attached normally but they were both stuck together in my tonsil bed and then the stylohyoid ligament ends in the hyoid area of the neck. So essentially, there can be 3 components to Eagles syndrome. Scientists have discussed a new name for the syndrome which comprises all 3 parts. So yes, in essence you do have Eagles but some might have a more precise and accurate name and I have not been able to figure out if the stylohyoid is normally attached to the styloid.

If anyone wants to educate me as well, I would love it but please speak in layman's terms. Thank you.

My very thick stylohyoid ligament was allowed to retract into my throat and I believe that it is one of the things that is rubbing my throat raw and hurting a nerve from time to time but I could be wrong. It could be referred pain. I stay confused about it .

I recommend a skull base physician who does external surgery for your situation. Dr Cognetti, Dr Samji, Dr Forrest and maybe a few others on the spreadsheet, I didn't check your location. I have attached a spreadsheet of doctors who have operated successfully on our members, not all will do external surgery. I will definitely see an external skull base surgeon if I need to redo my surgery because he can get to the end near the skull and the stylohyoid in one surgery, I hope.

Good luck.

295-EaglesSyndromeDoctors.xls (42 KB)
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Thanks. I am in Kentucky. Is there any type of test I can ask my doctor for to positively know that it is something that can be fixed with surgery? Right now he’s just shown me what he sees on a standard ct scan with contrast. He said he can tell just from that but of course he is not an expert with ES although he’s the first doctor after 2 years kt even mention it. My other ent doctor is scheduled to take my tonsils out in a few weeks but it sounds like I should cancel that and try to find a surgeon for the ES stuff instead. Just wish I could find somebody ASAP as it seems to have become a lot worse the last few weeks where I constantly feel like something is blocking my throat and can’t eat.

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Throat Crazy - I have been told that there is NO one test. That is part of what makes this diagnosis and treatment with surgery so difficult.

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Also double check for naturally elongated styloids which I had so my ct came back as unremarkable even though my styloids were 3.5cm they were bilaterally elongated not classic form I have experienced so much relief since my surgeries l side march 12 right side April 29 still have occasional problems but it is a big surgery.



ThroatCrazy said:
Thanks. I am in Kentucky. Is there any type of test I can ask my doctor for to positively know that it is something that can be fixed with surgery? Right now he's just shown me what he sees on a standard ct scan with contrast. He said he can tell just from that but of course he is not an expert with ES although he's the first doctor after 2 years kt even mention it. My other ent doctor is scheduled to take my tonsils out in a few weeks but it sounds like I should cancel that and try to find a surgeon for the ES stuff instead. Just wish I could find somebody ASAP as it seems to have become a lot worse the last few weeks where I constantly feel like something is blocking my throat and can't eat.
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Hi Throat Crazy, I also live in Louisville. Your sx sound like Eagle. I am having surgery on 7-22 by Dr Bumpous head and neck surgeon at U of L (ENT) . I rec that you see
him ■■■■■■■■. I’ll update on this site how my surgery goes. Good luck to you!