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?

@hoping

Hi,
I have been trying to just find an ENT who will take my case and look not at me like I’m nuts. I also have been struggling with ES. My Ct shows I have bi- lateral styloid that are extending to the hyoid bone. Both are fractured and one is said to closely approximate the oral mucosa.
I have ear-pain that feels like a bad earache, sharp pain that leads to the mouth when talking. I get frequent headaches, also pain in the neck area that’s is under the ear, pain where the jaw leads into the neck ( it’s under the chin about an 1 down). At times I get this popping sound in my neck that seems like something gets caught. The left side of the face slightly swells on and off. I periodically get a pain in the bottom of the neck like a sharp poke. An maxillofacial surgery is who diagnosed the problem and felt that I need surgery. So I went to one ent and he showed his true colors and told me he doesn’t believe in the existence of eagle syndrome. So he would have a bias prognosis and could not judge not case accurately. The 2nd ent stated that I needed to go see and spine and neck doctor and that my symptoms don’t constitute an es issue. He looked at me and said well Most people hear noise when They turn their head. He said but it could be a bulging disk. It has been a very disappointing and discouraging year. I am now looking for an ent at musc in Charleston. Does anyone have suggestions? There has to be someone who really takes people to heart and try’s to help because they care. Not the patient feeling like your the lier or the weird one.

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I also have the popping sound in my neck. I have an ENT who feels that it might be eagles syndrome but he keeps sending me to other specialist to rule out anything else. I have pain on/off for years but never consistent until 8 months ago. I had a minor cold with body aches that left me in bed for one day but the symptoms persisted. The side of my neck, and under my jaw feels like my glands are swollen and about to get the flu. My ear radiates pain, I have muscle spasms in my neck and now my tooth sensitivity is through the roof. Sometimes all symptoms are there at once, sometimes it varies and is erratic. A CT scan confirms the calcified elongated styloid process and the ENT was able to feel in from the inside. (I do not have tonsils). An MRI showed two bulging disk but the neurological surgeon said my symptoms do not relate to the disk issue. Some people say to hold off on surgery for a long as possible but at 57 the pain is a quality of life issue. I have another specialist to see on 1/31 then I loop back to my ENT to hopefully make a decision on what to do. Good luck to you.

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@vbammer

I have also been diagnosed with Eagle Syndrome and am scheduled for surgery January 4th. It took two years to get diagnosed. I am in pain constantly and feel like I have something stuck in my throat. The surgery is to take two hours with a good percent that it will relieve all my symptoms. Just not to thrilled with having my neck cut into. I have calcification in styloid not elongated.

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Hi
I have been thinking about you
And wondering if you were able to your surgery rescheduled.

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@brooklyngirl

I also have the popping sound in my neck. I have an ENT who feels that it might be eagles syndrome but he keeps sending me to other specialist to rule out anything else. I have pain on/off for years but never consistent until 8 months ago. I had a minor cold with body aches that left me in bed for one day but the symptoms persisted. The side of my neck, and under my jaw feels like my glands are swollen and about to get the flu. My ear radiates pain, I have muscle spasms in my neck and now my tooth sensitivity is through the roof. Sometimes all symptoms are there at once, sometimes it varies and is erratic. A CT scan confirms the calcified elongated styloid process and the ENT was able to feel in from the inside. (I do not have tonsils). An MRI showed two bulging disk but the neurological surgeon said my symptoms do not relate to the disk issue. Some people say to hold off on surgery for a long as possible but at 57 the pain is a quality of life issue. I have another specialist to see on 1/31 then I loop back to my ENT to hopefully make a decision on what to do. Good luck to you.

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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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@hoping

Hi
I have been thinking about you
And wondering if you were able to your surgery rescheduled.

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Hi, I have rescheduled for February 22. Not looking forward to surgery, but no more pain in neck which radiates to armm and feeling if something stuck in throat will make it worth it. I will make sure to post back with how it went.

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@brooklyngirl

I also have the popping sound in my neck. I have an ENT who feels that it might be eagles syndrome but he keeps sending me to other specialist to rule out anything else. I have pain on/off for years but never consistent until 8 months ago. I had a minor cold with body aches that left me in bed for one day but the symptoms persisted. The side of my neck, and under my jaw feels like my glands are swollen and about to get the flu. My ear radiates pain, I have muscle spasms in my neck and now my tooth sensitivity is through the roof. Sometimes all symptoms are there at once, sometimes it varies and is erratic. A CT scan confirms the calcified elongated styloid process and the ENT was able to feel in from the inside. (I do not have tonsils). An MRI showed two bulging disk but the neurological surgeon said my symptoms do not relate to the disk issue. Some people say to hold off on surgery for a long as possible but at 57 the pain is a quality of life issue. I have another specialist to see on 1/31 then I loop back to my ENT to hopefully make a decision on what to do. Good luck to you.

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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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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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@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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@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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@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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@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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@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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@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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