ES without pain and worse after eating or when tilting head?

General
1

I'm still trying to figure out what is going on with my throat and I think I'm feeling more and more like it is either ES or something related each day. Just wanted to see if anybody who actually has been confirmed to have ES has ever had these symptoms. My local ENTs all think there's nothing wrong with me and I keep feeling worse and worse so I'm wanting to find a doctor who is very familiar with ES. The problem is so far I haven't found any that are in my insurance network so I want to make sure I am at least on the right track before paying a bunch of money out of pocket just for an initial visit.

Symptoms I have:

- Almost constant feeling like something is "pushing" into the right side of my throat or swollen right at the point where my jaw and neck meet slightly forward of and below of the jaw joint (possibly right behind where right side tonsil would be). This symptom is always there to some extend and drives me crazy but seems to be particularly worse after eating and in the morning/late evening. I feel like if I open my mouth a certain way and stretch away from the feeling it actually makes it almost go away completely, as if I am making room so whatever is pushing isn't pushing as much.

- Right side ear fullness. Also worse after eating. I can open my mouth very wide and pop the ear but then it feels full again very quickly.

- Almost daily sore throat, but again only on the right side in the area where I feel the pushing sensation.

- Feels like when I breath in through my nose that I can feel the air more on the right side of my throat, like the right side is more sensitive or burnt or something. Again in the exact same spot as the pushing/swollen sensation.

- Wake up every morning feeling hoarse. Throat always feels dry on the right side.

- Often times it feels like when I'm breathing almost like something is in the way in my throat, like if there was a loose piece of skin or something getting sucked in and causing a tickle/gag feeling, again on the right side same spot.

- About once I day I will have a deep cough. It feels like I am coughing in order to get something out of my throat so I can breathe better as if I am choking but nothing every really comes out.

- I've noticed that many times if I tilt my head straight up like I'm looking up and past the ceiling it feels like something on the right side starts to poke or gag me and I start coughing.

- If I place my thumb and index finger around my neck right at the level where I feel the swollen feeling it does seem like I can feel a bump or something more on the right side than the left and I can especially feel like something more is there when I swallow while I'm feeling my neck.

The one thing I don't seem to really have is any pain. That is the only thing that concerns me as I see that many people with ES seem to have pain as the primary problem that is driving them crazy. For me there isn't any pain but the constant feeling like I'm choking and something is stuck in my throat is driving me crazy. I've had headaches and pressure around the same area and under my right eye and also do seem to have lots of congestion, but I don't know if that is related or if I also have some sort of sinus issue going on too.

The other strange thing that I don't see discussed much is that even though the symptoms are there all the time and sometimes do get worse on their own they seem to also get worse many times after eating. Is it possible that just the chewing action somehow irritates things with ES? This eating connection is what has led multiple doctors down the allergy and acid path even though I haven't found much in those areas.

I've had allergy testing, multiple ENT opinions, been to a TMJ disorder dentist, tried acid medicines... pretty much the same things as I've see a lot of people on here go through including having my tonsils out to no avail. At this point I've got one ENT swearing that it is all allergy related, multiple allergists including a test just last week showing no food allergies and hardly any environmental allergies, GI doctors saying they don't think it's an acid problem, and pretty much all the other doctors saying since they can't find anything it must just all be in my head and I should either take drugs or see a therapist.

Anyways, just thought I'd check in and see if anybody else has had similar things going on but then ultimately found that it was due to ES. I feel like there is definitely something in my throat but so far the doctors I've seen aren't coming up with anything. I feel like they think ES is so rare that that means there's no way I could have it despite us having gone down every other possible path but I'm like "even if it is rare, some people get it so maybe I'm just the rare one".

2

I think most people on here do get pain with ES, but the foreign body/ choking sensation is also very common. Mine started with pain under my jaw- the feeling of something pushing in the side of my throat I've had more recently. If you feel at the back of the throat, often people can feel a bone there below the tonsils. Lovely- I only dared to try that recently, and felt mine both sides! Having said that most people have pain, a lot of us have bi-lateral elongated styloids, but often start with pain on one side only, so just because you have no pain doesn't mean that elongated styloids are not causing your problems, and certainly tilting or turning heads causes worse symptoms. I get the blocked ears, feeling of pressure like when you're flying etc., both ears, and also feeling of blocked sinuses, but worse one side, that's quite common too. If you go on the discussions section and look for:

RESULTS: Eagle Syndrome Survey

Ang put on the results of a survey of symptoms she did, so you can see how common your symptoms are.

Have you had a CT scan to see if your styloids are long? If not then that should be done. I would add though, that surgery is often considered a last resort by most Dr.s, because of the risks involved, so if you're not in a lot of pain, you might find it hard to get an operation, and that is the only way you would stop your symptoms.

3

I didn’t have pain with mine. Just the sensation of something in my throat all the time. It was driving me insane. I went through all the test and des. just as you have. I am two weeks post op and glad it is over with. I still have a few stitches but as far as I can tell it is better and the surgery seems right now to be successful. I experienced some vertigo a couple of times and was feeling really bad like I had a constant sinus infection. I was so tired and run down before the surgery. I found a Dr. At MUSC in Charleston, sc and he didn’t hesitate one minute about doing the surgery for me. He was great too. Was able to do the surgery without taking my tonsils out or having to cut my neck. He removed an inch. I was back at work after a week. Find a Dr and tell him you think this could be the problem. Have the ct done and once you have the surgery you will be glad you did.

4

I have had CT scans and MRIs many times over the last 3 years trying to figure out this problem. I think they are always looking for tumors or things like that rather than specifically at the styloids though and they always come back as completely normal scans. I don't think it's that they are "missing" the styloids but rather that they just aren't trained to even consider that as an issue when reading the scans. I haven't had the 3D scan though and when I asked my local doctors they act like they don't even know where I would get that done.

Jules said:

I think most people on here do get pain with ES, but the foreign body/ choking sensation is also very common. Mine started with pain under my jaw- the feeling of something pushing in the side of my throat I've had more recently. If you feel at the back of the throat, often people can feel a bone there below the tonsils. Lovely- I only dared to try that recently, and felt mine both sides! Having said that most people have pain, a lot of us have bi-lateral elongated styloids, but often start with pain on one side only, so just because you have no pain doesn't mean that elongated styloids are not causing your problems, and certainly tilting or turning heads causes worse symptoms. I get the blocked ears, feeling of pressure like when you're flying etc., both ears, and also feeling of blocked sinuses, but worse one side, that's quite common too. If you go on the discussions section and look for:

RESULTS: Eagle Syndrome Survey

Ang put on the results of a survey of symptoms she did, so you can see how common your symptoms are.

Have you had a CT scan to see if your styloids are long? If not then that should be done. I would add though, that surgery is often considered a last resort by most Dr.s, because of the risks involved, so if you're not in a lot of pain, you might find it hard to get an operation, and that is the only way you would stop your symptoms.

5

Thanks for sharing. This is basically how I feel. I am always at odds as to whether it is a sinus problem or ES, or both as I often feel like I am congested or have sinus pressure on the same side yet when I have had sinus CT scans they always say nothing major is going on and all the various allergy medicines, decongestants, and steroids seem to barely help.

I have actually just had my tonsils out in July and also previously had a lymph node removed from the same area to see if maybe that was causing the pressure sensation. Neither things helped and I almost feel like the tonsil removal made things worse on the right side to where now the foreign body type pressure is more consistent than before.

Who was the doctor you found in Charleston? I am in Louisville, KY and right now am considering seeing Dr. Cognetti in Philadelphia or Dr. Forrest in Columbus. Unfortunately Dr. Forrest is not in my insurance network even though he is the closer one to me so I might go to Philadelphia instead. I just want to find somebody who can say "Oh yes, we have seen this before and here's what it is" rather than all my current doctors who just say "There's nothing wrong with you, just don't think about it and it will go away". I feel like I need a bone sticking out of my neck or something before they will acknowledge that there might be an actual issue rather than me just imagining it! :)

exployergirl2002 said:

I didn't have pain with mine. Just the sensation of something in my throat all the time. It was driving me insane. I went through all the test and des. just as you have. I am two weeks post op and glad it is over with. I still have a few stitches but as far as I can tell it is better and the surgery seems right now to be successful. I experienced some vertigo a couple of times and was feeling really bad like I had a constant sinus infection. I was so tired and run down before the surgery. I found a Dr. At MUSC in Charleston, sc and he didn't hesitate one minute about doing the surgery for me. He was great too. Was able to do the surgery without taking my tonsils out or having to cut my neck. He removed an inch. I was back at work after a week. Find a Dr and tell him you think this could be the problem. Have the ct done and once you have the surgery you will be glad you did.
6

I have two large styloid process one of which had partial removal last June. I have lots of symptoms but didnt have pain for many years and when I do now its rare and mild so yes you can have ES with no pain.

7

My understanding is that you can have a long styloid process and not have it impinging on the nerves. This is an avenue you should definitely pursue based on your symptoms. Find a doctor who is knowledgeable about Eagles. Good luck keep us posted.

8

My drs. name is Dr. Eric Lentsch. The original ent Dr that ordered my ct scan looked at the ct and said other than calcification near my thyroid he didn’t see anything. Well I took that same ct scan image to Dr. Lentsch and one look at it and he said I definitely had es. Get a Dr who is knowledgeable with it or you will never get a proper diagnosis.

1 Like
9

Did your ENT offer to do an injection at the junction of the jaw joint under the ear? Numbing the nerve there will test whether the pain stops; this would indicate Eagle syndrome.
Also have your ENT check your tonsils; they can be a secondary problem.

10

I don't really have any pain, just the swollen/feels like I can't breathe properly feeling all the time. None of my local ENTs have offered an injection, mainly because all of them say there's nothing wrong. One of the out of state people I talked to did mention that but I wasn't sure if that was a good thing to try or not since I had read that there is some risk with it since there are large arteries, etc. in the same area.

I had my tonsils removed in July but that just seems to have made the problem on the right side worse. The left side still has no problems.

Ladygw said:

Did your ENT offer to do an injection at the junction of the jaw joint under the ear? Numbing the nerve there will test whether the pain stops; this would indicate Eagle syndrome.
Also have your ENT check your tonsils; they can be a secondary problem.

11

Hi Throatcrazy,

I started with almost exactly the same symptoms as you. I had my tonsils out 10 years prior to the onset of my symptoms. I also have chronic neck and shoulder pain of that side. I have a deviated septum which might exaplain why the air flows through the right side more, but not sure how much this contributes to my symptoms. I asked for a CT to determine if Styloids were elongated. The report came back stating "excessive calcification/ossification of the stylohyoid chain bilaterally" even though my symptoms were all on the right side. A second CT I had a couple of ears later did in fact show that the right side was more calicified. The symptoms progressed over a few years before I had surgery. It was mainly for the swallowing difficulty that I had the surgery. I first had part of the stylohyoid ligament removed at the hyoid end. This actually made my swallow worse. I then had the styloid shortened on that side. This helped a bit witht he throat irritation but not the swallow. Not sure what to do next.

P.s. when I told the ENT about the cooling sensation on one side, he actually said to me that it must be psychological and I should see a psychologist about it.