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Eagle Syndrome
My son was diagnosed with Eagle Syndrome. It took years of him complaining to Dentists and Doctors before it was diagnosed. Finally a Dr referred him too the Cleveland Clinic. They were able to diagnose it, but didn't have a Dr on staff that could offer any advice. Being that Eagle syndrome is so rare less than 4% percent have this condition and of that 0.16% show symptoms.
We found a couple of Dr's who have treated the condition. But they claim the surgery is horrible they found it creates more issues. That to hold off as long as a person can.
It is very painful at times for my son. He said right now, he can feel the Styloid pressing on his Hyloid bone.
Does Mayo Clinic have any studies or Dr's that deal with Eagles Syndrome?
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@seekinginfo, yes, in the last paragraph I confirmed what you said. Three different ENTs looked through the same type of scope as the IU ENT, and somehow did not see the tumor. It is frightening to think how many people accept the false diagnoses when they need immediate intervention. Something here is definitely not right. I should have just termed those three as "bottom-feeders" instead of "less-than desirables." You called it and called it well. Thank-you, for that. God bless you.
@thompson
Thank you! And to clarify, the term “Bottom Feeder” was given to me by an ENT himself, whom I spoke with. He said that’s how they are viewed in the research and O.R. . Their surgeries do not bring the hospitals money because most are outpatient surgeries and many of their nasal/sinus surgeries are not founded on too high regard for successful outcomes or real proof of improvement.
Quality of life elective surgeries for most. Is what was said to me (with the exception of tumor/cancer removal). And the level of cancer research is the highest.
Many poor ENTs with a desire to cut on anything will walk around with a hammer wanting to find a nail, so actually causing harm to patients nasal/sinus area, that otherwise should never have been touched before. This is emerging research in the ENT community that most of their Nasal/Sinus issues can be resolved with the appropriate medical therapy, yet they have been trained to cut out viable functioning tissue and bone.
This is why many ENTs especially younger out of residency doctors are seen as “dismissive” when they are not eager to operate for nasal/sinus conplaints, they are the ones whom actually understand that MOST not all, but MOST of people who are recommended nasal/sinus surgery do not ever really need it in the first place.
I would rather have a surgeon turn me away, than be over zealous with his hammer, imagining that he sees a nail.
Your situation sounds unique and different and it sounds like the ENT you saw had a more appreciation for the Laryngology side of the ENT world. Which is another issue in and of itself, that we as patients are made to think that every ENT should be knowledgeable in the areas of Otology ( Ears) Rhinology (Nose) Laryngology (Throat) but that’s just not the case.
Every surgeon learns as they go. Which is why when dealing with a complex case you need to see a fellowship trained ENT which many are unaware of.
Nasal/Sinus surgery in Rhinology carries one of the highest litigation rates in ENT. And rightfully so as they have “trained surgeons” cutting at normal anatomy and tissue causing harm.
It’s a grey area specialty for sure.
Hello, I couldn’t figure out how to private message you but my boyfriend is in a situation and we are looking for a surgeon. His ENT told me he had a rare case f eagle syndrome yet the surgeon he sent us too said he could help. Could you possibly share who you went through? We have tried so many doctors and he’s starting to lose hope. His pain is getting worse and I didn’t know what else to do except hoping support groups in hope to find someone who was in the same situation. Thank you
I feel the same way. I feel when I am describing my pain the doctors think I’m crazy or mental. They just never understand me, they try to push me away like it’s nothing. It’s like no one takes my pain seriously and it’s making me feel hopeless. I watched so many videos on eagle syndrome, and truly think I need a styloidectomy. The meds don’t work, my symptom flare ups are getting worse.
I am in the same boat. One radiologist said I have a rare case of eagle syndrome as it is elongated and is calcifying from the middle/bottom on up rather than up to down. He sent me to this surgeon in U of M in hope to get me surgery but the doctor told me he wasn’t even that sure eagle syndrome was real and he tried say my symptoms were just to do with neuropathy but neuropathy is related to eagle syndrome. He sort of just pushed me away and said he couldn’t help as he didn’t think it was eagle syndrome even when one radiologist said they thought it was eagle syndrome. I’ve watched many eagle syndrome videos and they are going through what I go through. It made me realize I’m not crazy and that the pain is real. I’m looking for a surgeon who can help me. Wondering if anyone had and ideas
To everyone with Eagles Syndrome. Please get as many medical opinions as possible before you settle for that determination. If I had listened to the Radiologists after a CAT Scan (diagnosed Eagles Syndrome...NOT) and the three ENTs that did throat scans (said I needed tonsillectomy, had arthritis, needed mental help imagining the pain) I would be long dead. I did not listen and went for a fourth scoping--the same type scoping as the other three--and the Indiana University ENT found a throat tumor immediately. Hopefully, you do not have tumors, or cancer, but do not settle for that diagnosis. If anyone is interested, you can read about my journey in past comments. Best Wishes to you all.
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1 Reaction@thomason
This is the best advice given on this thread.
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