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.