I've posted my whole story here before so I won't go over everything again. Short version is for almost 3 years now I've had this feeling in the right side of my throat like something is swollen or choking me. It has been steadily getting worse and worse and seems to become the worst after eating certain things. I also tend to get ear fullness on the right side that I can "pop" by opening my mouth really wide, but that returns pretty quickly. It also gets worse when eating.
Sometimes after eating I feel like it is really swollen and feel like I am short of breath. This seems to follow a pattern where it slowly gets better over the course of an hour or two.
The swelling feeling is there pretty much 24/7 and driving me crazy because I constantly feel like I am about to start choking or something. Feels like somebody is just following me around with their fingers pushed into my throat. It is always in the exact same place which is pretty much exactly where the hyoid bone is on the right side. Like if you push the bone from the left side the spot where it pushes out on the right side is right where the sensation seems to come from.
I had a swollen lymph node removed from this area in 2012 just to see if that was causing the swollen feeling in my throat. Removing it didn't help and biopsy came back normal. Then just in July I had my tonsils removed as multiple ENT doctors had suggested that it may help since I seemed to always be pointing to right where the tonsil is on the inside. That doesn't seem to have helped and if anything I now also have a "tightness" on the right side where the tonsil was (strange that it is only on the right side as well). If I open my mouth really wide I can feel something stretching there and it relieves the issue as long as I hold my mouth open really wide but returns as soon as I stop stretching it.
Does anybody have any suggestions about this? I realize it may not be ES but thought somebody might have a suggestion as to what it might be. I have been to tons of doctors and have tried all sorts of drugs for acid reflux, allergies, antibiotics, etc. to no avail. I've had CT scans, MRIs, ultrasound of thyroid, bloodwork for thyroid, EKG, stress echo, breathing tests, methacholine challenge for asthma, chest x-ray, upper GI series, EGD scope, esophageal manometry, allergy tests, etc.
Could it be some kind of sinus issue that I have had for this long that is just causing problems on the right side? One ENT has suggested I have sinus surgery but I don't want to do that as a "maybe this will help" if it's not even related as I feel like the tonsils may have introduced another slight annoyance already. He has also mentioned we could fix my deviated septum but the deviation blocks the left side, not the right and he said he's unsure if it would help since usually it's the side that is blocked that has issues.
It seems like every doctor has a different random idea but none are really helping. This is a constant feeling of something pushing on my throat/blocking my ear that gets worse after eating. Here's a rundown of what each doctor is saying at this point:
ENT 1 - Did tonsils. Not sure of issue. Said hasn't had any issues with tightness after tonsil surgery before and doesn't know what else could be causing main issue.
ENT 2 - Did blood allergy testing and still thinks I have some kind of food allergy since some foods show up in the blood testing but not with skin testing. Because of this I have been gluten-free for a year but that doesn't seem to be helping. Actual allergist and Mayo Clinic have both told me that based on skin testing I have no food allergies and that the blood testing is not reliable for food allergies and only shows slightly higher than the threshold anyways. I do have environmental allergies that show up on the skin testing but I haven't ever had issues such as sneezing or watery eyes. This ENT is also the one suggesting that I fix the deviated septum and have sinus surgery. Most recently he said he sees signs of a sinus infection and gave me a course of antibiotics.
ENT 3 - ENT 1 sent me to ENT 3 as he is supposedly one of the best in town. He has done the nose scope and also had me tested for autoimmune conditions like Sjogrens Syndrome and Lupus but that was all negative. His suggestion at this point is to try taking Neurontin to numb the nerve but I have been avoiding that as I don't want to affect my whole body just to try and numb one nerve, and plus I don't think that the shortness of breathe, thick mucus, headache, etc. would be caused by just a nerve issue. This one also said that he is familiar with ES and doesn't think I have it.
ENT 4 - Went to another local ENT who I heard was familiar with these types of issues and he was the first one to suggest the theory of Hyoid Syndrome (rather than ES). He said he couldn't really help me though as he wasn't sure if I had that or not and he is not one who can fix it anyways.
Pulmonologist 1 - Has done all the breathing tests, asthma tests, etc. and can't find any issues.
Pulmonologist 2 - Pretty much the same as #1. He suggested I try several weeks of Sudafed, Chlor-Trimeton, and Flonase to see if it was allergies. Doesn't seem to be helping.
Allergist - Environmental allergies like trees and weeds show up on skin testing. Suggested I try several different OTC allergist pills. Also suggested trying high dose Nexium in case it is somehow reflux related. Have tried all the pills and sprays without any improvement.
GI doctor - Has done EGD scope, colonoscopy, manometry... all normal other than finding of Eosinophilic Esophagitis with EGD ( found on two separate EGDs). I don't feel like this is related though as the usual symptom of this is food getting stuck when swallowing which I don't have. Has also had me try several different acid medicines (Prilosec, Nexium, Prevacid) which don't see to help.
TMJ disorder specialist - Made me jaw splint. Wore for a few months and didn't help. Also sent me to physical therapist who did exercises and massages on jaw and neck but that didn't seem to help either. Latest suggestion is to see another person who supposedly can help train you to not clench your jaw.
Primary doctor - Has done bloodwork many times and doesn't find anything. At this point has suggested I just see a psychologist in case it is all just stress related. I explained that I don't have any stress other than this health issue that isn't going away. I don't see how it could be related to stress when I have actual symptoms such as the headaches, thick mucus, coughing, etc.
I just feel like this is some simple thing that nobody can seem to figure out. They all keep telling me it's nothing to worry about since I've had all the tests that would show anything "bad"... but that doesn't help me when I'm literally not doing anything at all every day because I constantly feel like this thing is in my neck choking me or making me short of breath.
Has anybody else ever heard of anything like this? I have no idea would could have started these problems out of the blue towards the beginning of 2012. I keep wondering if it is somehow related to having my wisdom teeth removed a few months before or if it something to do with posture as I do sit at a computer all day... just not sure why that would be worse after eating and also have coughing and mucus with it.
I called one of the doctors from the list here but unfortunately he was leaving and referred me to his partner. Later I found out that they are not in my insurance network and they said just the initial visit would be $500. If I knew they had a fix I would gladly pay that, but I don't want to go to them just for them to tell me what all the other ENTs have said since I have met my regular deductible and can go to pretty much any other doctor without much out of pocket.
Any suggestions are appreciated! Thanks.