Really going crazy... any help appreciated!

General
1

Hey everybody, if anybody has any suggestions on what I can do next/who I can see I would really appreciate it. I've been dealing with some mystery problem for over two years now and my journey through multiple doctors led me to this forum a few months ago when an ENT doctor mentioned ES to me.

My original problem started about 4 months after I had 5 wisdom teeth surgically removed (all were impacted) along with having 2 other teeth removed that had failed root canals, and then yet another molar removed with a failed root canal a few months later. I also went through a lot of stress during this time so I'm not sure if one thing was impacted by another or if it was all just from my jaw changing from the tooth extractions.

The initial symptom was just a fullness in my right ear, like I needed to pop it. This progressed to a lump in the throat feeling on the right side which got worse after eating. This has become progressively worse over the last two years to the point where I was barely eating anything because as soon as I ate I would feel like my throat was getting tight and felt like I wouldn't be able to breathe.

Last month I had my tonsils removed mainly as a random guess since a few ENTs had mentioned it and they couldn't find anything else wrong with me. I don't think it helped much but at least it has ruled them out.

My current issue, which just started in the last few weeks, is that I now almost CONSTANTLY feel like my throat is tight, my ear is full (have to continuously open my mouth as wide as I can all day until my ear pops and the pressure is relieved, but then it comes right back within a minute), and now a new problem is that I feel like there is a small piece of food or something stuck in the very back right corner of my mouth. The same type of feeling you would have if a piece of rice or something was stuck back there. This has been lasting for weeks on and off. I stick my finger back there and can feel exactly where the feeling is coming from, but there isn't anything there to remove. It sort of feels better if I push my finger back there but it comes right back when I remove my finger. It's the very back corner where your top and bottom jaw meet.

This is driving me crazy and making it so I can barely function or do anything because I am literally up all night feeling like I'm choking and anytime I try to go out and do anything I feel like food is stuck, my throat is tight, and my ear is full.

I've had every type of test for allergies, acid, MRI, CT, etc. etc. and all the doctors assure me that nothing serious is wrong. It's as if they don't think I'm dying so they don't really care that I can't function or that I FEEL like I'm on the verge of choking all the time.

I recently went to my endodontist who did some of the root canals to see if he could spot anything. He didn't see anything but referred me to an oral pathologist. The oral pathologist said he could definitely tell that when he put his fingers on both side of my mouth that the jaw muscle on the right side was much bigger. I also had an ENT doctor tell me that my hyoid bone was slightly longer on the right side.

So now I'm trying to figure out what to do. I'm leaning towards all of this somehow being caused by the tooth extractions which in turn have caused my right side jaw muscle to get larger and larger over two years to the point that now it is causing all sorts of problems with my ears and throat. I'm not sure who can properly diagnose this or how it is treated. Is there a scan or something that would definitively show that the jaw muscle is abnormally larger on one side? Nobody seems to notice anything on the regular imaging studies. Maybe the muscles don't show up or aren't being looked at? Is there some type of therapy that makes the jaw muscle go back to the normal size? I can constantly feel like my teeth are being clenched on that side or even if I consciously keep my teeth slightly apart I can still feel the muscles in my face on that side tensed up all the time. I think this is what's causing the muscle to grow larger.

I recently had a neurologist give me the drug Neurontin to try. He said it may help if this is being caused by a nerve issue but I haven't tried it yet. Does anybody else have experience with this?

I also have an appointment with another ENT who is supposed to be familiar with ES and Hyoid issues. He has suggested we could try an injection in the neck to numb the nerves and see if that helps but I'm a bit concerned about that procedure since I'm not sure anybody really knows what is causing all this. I mentioned this in a separate post to see if anybody else had done the injections but I didn't get any replies so just mentioning it here again.

If anybody can steer me in the right direction I would surely appreciate it. I can't even seem to find any type of medicine that will even relieve the symptoms at all. At least if I could take Advil or Sudafed or something and get some temporary relief I would be able to tolerate it better but right now it is non-stop all day every day.

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I’m sorry you are having such a difficult time finding answers and getting relief. Some of the symptoms you describe I experienced. I found that sleeping with my head slightly elevated helped with that feeling of not being able to breathe.
Have you followed Emma’s discussions…you will find a spreadsheet of doctors that are experienced in treating Eagles.

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Thanks. Yes I have tried staying elevated while sleeping but I don't think that seems to help. Just in the last week or so it has become more of a constant feeling rather than just when I eat. I don't know if it's even related to ES or Hyoid but either those or some type of TMJ/bruxism/enlarged jaw muscle seem to fit the bill. I've actually found that if I sleep on my stomach with my head forward and maybe a pillow stuffed under my chin that it seems to help a little. Like applying pressure to the underside of my right jaw eases the tension or something. Just not sure why it feels so swollen and tight and why nobody can seem to see any signs of that on the imaging studies. The only thing I haven't had is ultrasound but I would think something would show up on CT, MRI, or x-ray if things were as swollen as they feel.

I actually contacted Dr. Forrest at OSU from that list. Unfortunately he is leaving the practice soon but they referred me to another doctor there and he is the one that mentioned the injection as something to try. I just don't know if that is too risky for side effects to try when it is just an experimental procedure that we aren't even sure is treating the right thing.


JKL said:

I'm sorry you are having such a difficult time finding answers and getting relief. Some of the symptoms you describe I experienced. I found that sleeping with my head slightly elevated helped with that feeling of not being able to breathe.
Have you followed Emma's discussions...you will find a spreadsheet of doctors that are experienced in treating Eagles.
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It just so happens that Dr. Forrest was my surgeon! He is moving to the Cleveland Clinic and will still have a small practice there but mostly doing admin work. Dr. Cognetti is also highly regarded by this forum. I would try to see one of them if that is close for you.
A TMJ specialist might be able to address the jaw issue…

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You may also find out that one jaw bone joint is longer than the other. My jaw bones are not nearly alike. The jaw has sort of round bones that sit in a socket. My two bones are totally different. That is why my muscle is bigger on one side and everythng is bigger on one side. When I open my mouth wide, my lower jaw shifts way off to one side whereas most people the jaw just opens down.

I think this congenital abnormality is why I have Eagles. The muscles and bones do not sit properly and the ligaments get pulled and yanked. I would recommend you try Dr. Cognetti for help for the Eagles. Check out the spreadsheet attached. I do have a few more doctor to add, but I haven't gotten to it yet. All the doctors on the spreadsheet except one that I found listing Eagles in his bio. I do not know any of them myself.

257-EaglesSyndromeDoctors.xls (42 KB)
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Thanks for the info.

The main thing that is driving me crazy right now is the feeling that there is something stuck in the back right of my throat. It feels like there is pressure in my ear and in my throat on the right side. The best way I can describe the location is as far back as you could stick your finger into where your upper and lower jaw meet on the right side. If I am able to "pop" my ear then it also seems to relieve the sensation I feel in my throat as well for a few seconds and then both the ear fullness and the throat/foreign object sensation come back. I don't really have any pain at all. It is mainly this discomfort and constant feeling like I won't be able to breathe or that my head just has so much pressure on that side.

Since I don't really have much pain I'm always wondering if it could be related to TMJ or ES or anything because it seems like everything I've found online describes those as definitely having pain as the primary symptom. My primary symptom is feeling like something just isn't right and I can't think straight since I feel like the pressure is too high.

emma said:

You may also find out that one jaw bone joint is longer than the other. My jaw bones are not nearly alike. The jaw has sort of round bones that sit in a socket. My two bones are totally different. That is why my muscle is bigger on one side and everythng is bigger on one side. When I open my mouth wide, my lower jaw shifts way off to one side whereas most people the jaw just opens down.

I think this congenital abnormality is why I have Eagles. The muscles and bones do not sit properly and the ligaments get pulled and yanked. I would recommend you try Dr. Cognetti for help for the Eagles. Check out the spreadsheet attached. I do have a few more doctor to add, but I haven't gotten to it yet. All the doctors on the spreadsheet except one that I found listing Eagles in his bio. I do not know any of them myself.

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ThroatCrazy, we've had a couple people on here with Eagles who've had no pain. It's unusual, but not unheard of.

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The other thing I am considering at this point is that maybe there is an issue with a stone or obstruction in my parotid salivary gland on that side. From what I've read my symptoms seem similar to that as well. My ENT doctor claims that it would have shown up on a CT scan by now but it seems like there are specialized tests just for the salivary glands to identify blockages.

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You have almost the same problems I have had including the feeling of something stuck but mine progressed to a pain and the feeling that something was trying to break through the tonsil. Now I am still having some eagle type symptoms but not nearly as intense because after the surgery my teeth are trying to close differently strangely my overbite is gone and my bottom jaw also wants to close slightly right of where it previously had. I need to get my teeth fixed after years of grinding because of the ES but my jaw still aches if I open my mouth wide from the two surgeries so I have been putting it off… I do notice some ES type symptoms but not as badly. The prednisone did help but not with the actual pain. It helped with the congested feeling that was driving me out of my mind between the constant ear fullness and the feeling that I couldn’t breathe through my nose. The actual pain intensified but I could deal with that more than the symptoms it helped. The steroids also helped give me some energy and reduced my anxiety I believe this was because of a reduction in swelling through the irritated nerves and sinus/ear area, but as I said the pain issue through the area was definately intensified. So I guess it is a matter of which type of problem you are set up to cope with more and I am better able to tolerate the acute pain and not the ear/nasal issues.r/>


ThroatCrazy said:

Thanks for the info.

The main thing that is driving me crazy right now is the feeling that there is something stuck in the back right of my throat. It feels like there is pressure in my ear and in my throat on the right side. The best way I can describe the location is as far back as you could stick your finger into where your upper and lower jaw meet on the right side. If I am able to “pop” my ear then it also seems to relieve the sensation I feel in my throat as well for a few seconds and then both the ear fullness and the throat/foreign object sensation come back. I don’t really have any pain at all. It is mainly this discomfort and constant feeling like I won’t be able to breathe or that my head just has so much pressure on that side.

Since I don’t really have much pain I’m always wondering if it could be related to TMJ or ES or anything because it seems like everything I’ve found online describes those as definitely having pain as the primary symptom. My primary symptom is feeling like something just isn’t right and I can’t think straight since I feel like the pressure is too high.

emma said:

You may also find out that one jaw bone joint is longer than the other. My jaw bones are not nearly alike. The jaw has sort of round bones that sit in a socket. My two bones are totally different. That is why my muscle is bigger on one side and everythng is bigger on one side. When I open my mouth wide, my lower jaw shifts way off to one side whereas most people the jaw just opens down.

I think this congenital abnormality is why I have Eagles. The muscles and bones do not sit properly and the ligaments get pulled and yanked. I would recommend you try Dr. Cognetti for help for the Eagles. Check out the spreadsheet attached. I do have a few more doctor to add, but I haven’t gotten to it yet. All the doctors on the spreadsheet except one that I found listing Eagles in his bio. I do not know any of them myself.

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I still am suffering from confirmed eagles left side since 2010 yes the sore throat and painful swallowing and anything cold really irritates it and some times you need to heat drinking water. Now new treatment is the medicine tegetol. Seems to really help .This is message from your friend peaches gorilla .may God be with you through this confusing time.

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Oh by the way a nap robin and a heating pad for a couple of days should help.

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That is a pain pill naproxin