No where to turn to answers

About a month ago I had an ear ache, I didn’t think anything about it, just took some ibruprophin and ignored it. I would sometimes get and earache in my left ear and when I went to the dr they would look and say everything looks good. Again, I would just shrug my shoulders and ignore it. Well it kept getting worse and worse and then my throat started to hurt, but only on the left side. When I went to the dr I assumed that I had a sinus infection, that they would give me antibiotics and send me on my merry way. Well, they couldn’t find anything wrong during the examination. They said that it could be this tube in my ear that is swollen and gave me nasal spray to use. Well, the pain only got worse and worse. That following week I missed the whole week of work. I was at the doctor every day. He prescribed me antibiotics, he took blood, he did and ultra sound…the blood showed that I have hypothyroidism. The ultra sound showed that I had two enlarged lymph nodes. So,I was told that the pain was coming from the lymph nodes and they put me on Norco for the pain but he wanted me to see an ENT because he felt that something more was going on. At the ENT, after the examination, she told me she feels it is two things I have going on. 1) I have TMJ and she wants me to see a dentist. 2) I have Eagle Syndrome. She sent me for a CT scan and the image came back that my styloid on that side is 4cm and is consistent with Eagle Syndrome. She sent me to a “specialist” at Loyola Medical Center in Maywood, IL (a suburb of Chicago). He did an examination, did a scope and then looked at the CT scan. He came back and told me that altho I have the elongated styloid, he could not feel the tip poking the back of my throat and does not feel that the symptoms of EagleS Syndrome come after a long period of time and do not start as fast and painful as mine did and that the symptoms I am experiencing are not due to the Eagle Syndrome. He said that my tonsil was inflamed and put me on yet ANOTHER antibiotic and steroids (again) and told me that if I do not get any relief in 2 weeks, he was going to take the tonsil out. I know almost nothing about Eagle Syndrome. I do know that I have a horrible ache in my left ear and throat, that the pain is also in my jaw, neck and when i turn my head, I have a lot of pain when I eat,drink swallow and talk. I am not having a hard time swallowing but I am not sure if that is related or not. I am not looking forward to a surgery of ANY kind and from what the Dr told me, the surgery for the Eagle Syndrome is very difficult and painful. I also wonder, is there a correlation of all my symptoms, the enlarged tonsil and the enlarged lymph nodes (again all on the left side) it just feels to me like no one is looking at EVERYTHING…

. . . he could not feel the tip poking the back of my throat and does not feel that the symptoms of EagleS Syndrome come after a long period of time and do not start as fast and painful as mine did and that the symptoms I am experiencing are not due to the Eagle Syndrome.


This is a pretty typical doctor's response.. Eagles doesn't seem to follow the rules that a lot of doctors feel it should. But a lot of our stories don't fit everyone's rules. It's surprising to go back and read all the stories on this forum - such a crazy range of often unexplainable differences. You may very well have some pain from something else, but the only way to know is to get the styloid removed COMPLETELY and see what symptoms are resolved.

I've had 4 Eagles surgeries and they were not that bad at all compared to some other surgeries i've had. I think they sound scary because people are trying to give complete descriptions so others know what to expect. But all surgeries are going to hurt some because you just got cut open. But I've usually gone back to work easily in 2 weeks. Having Eagles is so much worse than any surgery I've ever had.. The surgery to fix it was a piece of cake compared to the pain i had before it.

All 4 of my surgeries have helped. My issues came up because the very first surgeon i had didn't understand Eagles and didn't take enough out.

My suggestion is to go to a different doctor. I think there's an experienced doctor at the U of Chicago if you can't travel. A lot of us have to travel to get this taken care of. Good luck!

Thank you so very much for answering me!! I feel all alone in this. I was so disappointed in this doctor that I seen. He every time I think I am close to getting an answer, the father I get pushed. How long have you had Eagle? Do you have it on both sides or just one?

Please do not feel alone we are all here to help! This site was my savior! I have had symptoms of Eagles since my early teens but did not realize this because the symptoms can be so vague and sometimes psoriatic I had bilateral natural elongation. I went progressively down hill to the point I did not feel like I could move the depression and anxiety became overwhelming. I had for 15 years a vague discomfort in my throat and then suddenly I developed pain and a feeling that something was trying to break thru my tonsil. I thought it was maybe a cyst I went to the dentist and was told it felt like bone. I went to the ENT and she IMMEDIATELY was surprised and said she thought it was Eagles. She however did not perform this surgery you need a skull base ENT surgeon. She gave me a referral and sent me for a CT w/ contrast the report came back negative I was devastated I had in the meantime researched and found so many symptoms were related to Eagles. I kept my other appt. anyway and the ENT confirmed eagles by the length I guess ct readings are frequently negative because the radiologist does not understand that it is length and not calcification. The ENT did not think my symptoms were related to eagles but gave me hope that if I saw a couple other specialists and was negative he would believe. In the meantime I went for a second opinion this dr also agreed I had eagles but felt it was TMJ causing symptoms note I have never had a click in my jaw and his resident disagreed vehemently he truly felt it was eagles. I got thru my 4 months of waiting to see the other specialists and they cleared me. I went back to the ENT thinking he would schedule surgery and he told me he didn’t think he would do it… I proceeded to have a breakdown in his office he eventually agreed. He performed the surgery on left side first which was the most bothersome and he was completely amazed by the improvement! So he performed the other side. It has been an off again on again road to recovery. I have flare ups as the nerves regenerate but I always have some of the major symptoms improved! I am lucky to live in Ma where we have world class doctors! Keep on fighting this disease is so misunderstood!

Thank you so much for sharing your story!! I actually was diagnosed by my ENT and the radiology report came back positive for Eagles, but it seems that every dr wants to find another reason for the symptoms. After reading so much of other peoples stories I have deducted that because there is so much unknown about it, they don’t want to take the chance in going someplace they don’t know so look for what they do. It keeps them safe but does nothing to help us (I am sorry I sound very snarky just now and may be WAY off base, but through my experience so far, that is what I am seeing. I am so sick of taking antibiotics and steroids that DON’T work! I live to take the pain medicine that I HATE HATE HATE depending on. Depression and anxiety have started to set in…work is not understanding and standing besides me…I worry every time I call in that this will be the time they tell me not to come back. I am always so tired and in pain…I feel as if my life has been taken away from me because the pain without the pain meds is debilitating at times. If it IS my tonsils, I BEG them to take them out!! NOT give me more antibiotics and steroids and tell me to wait!!
I am sorry! Caught me at a bad moment…not doing too good today…THANK YOU SO MUCH AGAIN FOR THE SUPPORT!!


Joy, don't worry - you are not alone. You're expressing exactly what so many of us have felt like. I've been in this Eagles craziness for about 4 years now and it's kind of like one step forward two steps back sometimes. You are so right - doctors want to find any other reason for our symptoms. And then when they can't, they still don't want to fix it. It's so frustrating.