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?

Interested in more discussions like this? Go to the Ear, Nose & Throat (ENT) Support Group.

@hopeful33250

Hello @cjohansen and welcome to Mayo Connect. I'm glad that you found our online patient network. You may wish to join Connect members talking about Eagle's Syndrome here:

– Eagle's Syndrome https://connect.mayoclinic.org/discussion/eagles-syndrome/

How long ago was this problem diagnosed? As you say, this problem is affecting your vocal cords, I'm wondering if you have both speech and swallowing problems?

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About 12 years ago I was having a swallow study and the radiologist told me I had Eagle Syndrome. He said most people don't have any symptoms from it. I didn't even think of it again until about a year ago when I started having trouble swallowing. I also had numbness and pain on my face, and it felt like I had a foreign body in my ear but I could hear fine. Since then I have been looking for answers. The only speech problem I have is my voice is hoarse and much deeper than it used to be. thanks

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@cjohansen

About 12 years ago I was having a swallow study and the radiologist told me I had Eagle Syndrome. He said most people don't have any symptoms from it. I didn't even think of it again until about a year ago when I started having trouble swallowing. I also had numbness and pain on my face, and it felt like I had a foreign body in my ear but I could hear fine. Since then I have been looking for answers. The only speech problem I have is my voice is hoarse and much deeper than it used to be. thanks

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oh, I saw 3 ENTs that didn't know what was wrong. Then my doctor ordered a swallow study and when they put the camera down my nose they saw the intrusion. They sent me to the University of Washington Medical Center. I am seeing a otolaryngologist there. She ordered a CT scan and found the problem. Next is a 3D CT scan and more tests. Then, probably surgery.

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@carolinedoubt

Anyone out there that knows anything about eagle syndrome surgery? I have been diagnosed and surgery is an option. It would be nice to find someone who has had this surgery.

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After suffering for one year with ear and throat pain, I went to several different doctors, having throat-scoping's, exams and x-rays. Doctors concluded I had everything from allergies to Tonsillitis. Disturbingly, my tonsils had long since atrophied away due to age. Once, while in agonizing pain, I went to the Emergency Room (ER) and requested a CT scan. The ER doctor stated, "I guarantee you it would be a waste of money, since you don't have cancer." Finally, yet another doctor finally prescribed a CT scan. After reading the scan, doctors said it must be Eagles Syndrome since my Styloid bones were slightly elongated. The way the pain was increasing. I did not believe this conclusion. Finally, yet another ENT did another scope (just like the others had done) and immediately saw a white patch in my throat. After a biopsy, it was determined to be cancer of the Pyriform Sinus. These are located near the vocal cords in the throat. I will never understand how the radiologists that read the CT scan did not see the tumor, because when the doctor showed me the CT image on his screen it was very obvious. All this to say, do not give up with a few opinions. Go to a University Specialist and get yet another opinion. If I had listened to the radiologists, I would be waiting around with a growing cancer. As it is, by the grace of God, I am alive.

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@karencecilia

I have had facial pain for a long time. I have been wearing a hard plastic splint for "TMJ" for 30 years. With excessive stress I felt like I needed to have a new split. I found my face was hurting, my ear ringing loud (right sided) . I had a tooth injury from biting wrong. I went to my dentist to ask to have a new splint made, he was really concerned with the degree of pain in my jaw and ended up referring my pano x-ray to an Oral Surgeon who identified Eagle Syndrome, my dentist then forwarded them without suggestion to another Oral Surgeon who also immediately identified Eagle Syndrome. My PCP has never heard of Eagle Syndrome. The diagnosis is helpful, it answer a lot of the oddities that I attributed to stress. I have dizziness, ear pain, often feel like something is sticking in my throat. I have a tendency to get hiccoughs when I have the sensation of something in my throat (which is embarrassing). I feel like there is a scary road ahead. The images and stories.... As a mother of 5, I am a bit scared, a bit of anxiety about the unknown. I am hopeful that my care will fall into capable hands.

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Hi- I was just told that my styloids are 3.8 mm and calcified, and that Eagle Syndrome is a possible diagnosis with more testing needed. I have cervical instability severe at C1-2, and herniation and nerve disruption C4-7. Is the Eagle Syndrome surgery only done in emergency situations and what constitutes an emergency? I am having so many symptoms and so much pain; it is unbearable. Thank you

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@cbsluder18

Hi- I was just told that my styloids are 3.8 mm and calcified, and that Eagle Syndrome is a possible diagnosis with more testing needed. I have cervical instability severe at C1-2, and herniation and nerve disruption C4-7. Is the Eagle Syndrome surgery only done in emergency situations and what constitutes an emergency? I am having so many symptoms and so much pain; it is unbearable. Thank you

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...wish I had an answer but only hearD about eagle syndrome recently; but in my opinion havING extreme pain that is unbearable should be considered an emergency if cannot be brought under control... relentless pain is horrible and comparing it with such things as life-threatening emergency is sort of apples vs oranges, but has your docor given you a time frame to have the operation? Hope someone will have a better reply for you,....BEST OF LUCK, J.

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@cbsluder18

Hi- I was just told that my styloids are 3.8 mm and calcified, and that Eagle Syndrome is a possible diagnosis with more testing needed. I have cervical instability severe at C1-2, and herniation and nerve disruption C4-7. Is the Eagle Syndrome surgery only done in emergency situations and what constitutes an emergency? I am having so many symptoms and so much pain; it is unbearable. Thank you

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Welcome @cbsluder18. I moved your post to this existing discussion on the same topic:
– Eagle Syndrome https://connect.mayoclinic.org/discussion/eagles-syndrome/

I did this so you can read previous posts and connect with other members like @cjohansen @ladylove1962 @abby4paige @theeaglehasland @keetee @jenlink and many others, some of whom have had surgery.

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@marjana

Yes I'm the one that had surgery in 2021 and if need more info here let me know.

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Hello, would you please be able to give me information about where you got your surgery? Thank you so much

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@abby4paige

My surgeon was at the University of Minnesota.

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I have an appointment with them next month. Do you mind if I ask who did your surgery and was it done intraoral?

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I had Eagle Syndrome diagnosed in 2017 and it has become chronic now.
My Family Dr sent a referral to Mayo & after being sent to ENT, then Gastro then Neurology & back to ENT they finally after a month declared they don’t have anyone to help & can’t give me an appt!!! I am frustrated, furious & in pain with NO-ONE to help me!
I have jaw/ear pain, tinnitus, headaches, feeling of something stuck in throat. Gag if I suck through a straw or use a q-tip in my ear. My hearing is bad due to tinnitus.
Tried steroids & shots, Botox, lidocaine, pain meds, but it’s getting worse.
I am at my wits end as I thought Mayo Rochester would at least be able to help or point me in the right direction. But they have failed on both counts.

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Sorry to hear this... although five years ago, am wondering who diagnosed your Eagle Syndrome and if that person/dr has some suggestins for you?

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