1. < Ear, Nose & Throat (ENT)

Eagle Syndrome

Posted by Jackie, Alumna Mentor @travelgirl, Apr 25, 2018

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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vbammer | @vbammer | Jan 22, 2019
In reply to @hoping "Be encouraged!! I’m hoping it will work out for you. I had a bilateral styliodectomy January..." + (show)
@hoping

Be encouraged!! I’m hoping it will work out for you. I had a bilateral styliodectomy January 7. I’m post operative 2 weeks and doing just fine. I had tons of swelling in my neck and face that slowly subsided. I took 2 weeks off work but the doctor said 3 weeks recovery period is the best. I still can not to no lifting or have any vigorous activity. Because my tonsils were removed I followed that post op with some add ones from the doctor. My surgery was done through the tonsill cavity not the neck. I key for me was that all my medications needed to be liquid because of the swelling. It was really bad that even water if I didn’t drink slowly it went up my nose. The great part is my symptoms is eagle Syndrome are all but gone. I feel like a new person.
The doctor said you can have mock issues up to 3 weeks as your nerves and inflation and having to readjust.
Hope this helps

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Yes, huge help thanks. Tonsillectomy 😵. I had that done this past year. That is a painful recovery. I am getting the external surgery. They are also removing cyst from nose. I am so happy to hear your symptoms are gone. I do not know what it is like to live w/o discomfort. Happy for you and happy for me soon. What a rare thing to have.

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1 reply
hoping | @hoping | Jan 22, 2019
In reply to @vbammer "Yes, huge help thanks. Tonsillectomy 😵. I had that done this past year. That is a..." + (show)
@vbammer

Yes, huge help thanks. Tonsillectomy 😵. I had that done this past year. That is a painful recovery. I am getting the external surgery. They are also removing cyst from nose. I am so happy to hear your symptoms are gone. I do not know what it is like to live w/o discomfort. Happy for you and happy for me soon. What a rare thing to have.

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Yes Thank you. It is nice to be without pain. I praying for the same for you also. I really hope a doctor has or a researcher has compassion on those that suffer and more is found out about this disease.

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brooklyngirl | @brooklyngirl | Jan 23, 2019
In reply to @vbammer "Your symptoms sound similar to mine. My ENTs did a sialendoscopy first, then a Tonsillectomy. It..." + (show)
@vbammer

Your symptoms sound similar to mine. My ENTs did a sialendoscopy first, then a Tonsillectomy. It was a CT Scan with contrast that found my Eagle Syndrome. Two horrible surgeries later then they find it. The radiologist didn't even see it, they only saw cyst in nose. My ENT took my disc and kept moving it forward and backwards and said "how did I miss this". If I didn't fight with him for over 30 minutes he may have never looked more closely. I have relief of symptoms when I swallow when people usually have pain when swallowing. My calcified ligament is pressing on my nerve all day. My symptoms would come and go for about two years. Now my symptoms are cconstant.I am on maximum Tylenol and Motrin just to make it through my work day.

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I am so sorry that you had to go through all of that before the diagnosis. From what I hear and read, that happens frequently. The symptoms change according to how I spend my day and what nerve or vessel the ligament is pressing into. I appreciate your feedback and good luck!

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brooklyngirl | @brooklyngirl | Jan 23, 2019
In reply to @hoping "Yes, Hoping for the best. I have read it’s wise for the ENT’s to make sure..." + (show)
@hoping

Yes, Hoping for the best. I have read it’s wise for the ENT’s to make sure the pain isn’t from anything else before scheduling a styoidectomy.

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That's what the ENT said - lets cross the Ts and dot the I(s) and rule out anything and everything else. Its so rare that it seems its the only what to approach this.

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1 reply
rondam | @rondam | Jan 23, 2019
In reply to @brooklyngirl "That's what the ENT said - lets cross the Ts and dot the I(s) and rule..." + (show)
@brooklyngirl

That's what the ENT said - lets cross the Ts and dot the I(s) and rule out anything and everything else. Its so rare that it seems its the only what to approach this.

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We have to take charge of our own health care or no one else will, we know our bodies better than anyone. Prayers

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meliss | @meliss | Jan 31, 2019
In reply to @fatihandhope "Hello fellow sufferers and caregivers. FaithandHope here - from Sugar Land TX. I just found this..." + (show)
@fatihandhope

Hello fellow sufferers and caregivers. FaithandHope here - from Sugar Land TX. I just found this community during my own desperate search for answers. It has been a long road. I will share my journey on another post, but first, please answer the following question. For those afflicted and diagnosed with Eagle's Syndrome - how many have had orthodontic work done?

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Yes, I have ~ uppers, front six teeth. Had them done several years ago.

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meliss | @meliss | Jan 31, 2019
In reply to @hoping "Be encouraged!! I’m hoping it will work out for you. I had a bilateral styliodectomy January..." + (show)
@hoping

Be encouraged!! I’m hoping it will work out for you. I had a bilateral styliodectomy January 7. I’m post operative 2 weeks and doing just fine. I had tons of swelling in my neck and face that slowly subsided. I took 2 weeks off work but the doctor said 3 weeks recovery period is the best. I still can not to no lifting or have any vigorous activity. Because my tonsils were removed I followed that post op with some add ones from the doctor. My surgery was done through the tonsill cavity not the neck. I key for me was that all my medications needed to be liquid because of the swelling. It was really bad that even water if I didn’t drink slowly it went up my nose. The great part is my symptoms is eagle Syndrome are all but gone. I feel like a new person.
The doctor said you can have mock issues up to 3 weeks as your nerves and inflation and having to readjust.
Hope this helps

Jump to this post

So happy to hear your symptoms improved and you're on the mend. Do you mind sharing your doctor and where you had your surgery? I see an ENT tomorrow and am convinced I'm in the same boat 🙁 Swallowing has been an issue off and on for a year or so. I assumed I was eating to fast, however two weeks ago I began with a sharp pain on my left side (below my jaw and ear). After researching extensively, I can check yes to all symptoms 🙁 Hoping to her from you 🙂

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1 reply
de9g | @de9g | Feb 6, 2019

Hello Everyone! Recently diagnosed with Eagle Syndrome after more than 20 years of symptoms. Now I am in the waiting process between getting 2nd opinion, getting needed approvals and getting on surgery schedule. I understand why some would not have surgery at this point, but I'm way past that time. I have right side headache, earache, pressure, hearing loss, neck pain,
anxiety, increased heartbeat when laying down and now problems in mouth and throat and will take the surgery option.

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brooklyngirl | @brooklyngirl | Feb 6, 2019

Hi de9g. I am so sorry to hear. I have most of what you describe and its a real quality of life issue. The head neck surgeon I am working with wants me to get a third opinion but in all the waiting it seems like things are getting worse. I am in NYC. I wish you all the best.

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de9g | @de9g | Feb 6, 2019

You are right, absolutely a quality of life issue! I do not understand the 3rd opinion request unless it is with a doctor who is familiar with ES. Otherwise, the 3rd opinion doc may want a 4th opinion. Wishing all of the best for a successful resolution!

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