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?

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

Erika | @erikas | Jan 14, 2021
In reply to @abbyco "Hello! I was diagnosed with ES after a 9 year hunt that lead me to more..." + (show)
@abbyco

Hello! I was diagnosed with ES after a 9 year hunt that lead me to more specialists than I can count. I’m reading through these posts and it seems that most people have not pursued surgery. I just wanted to offer that I had a styloidectomy in Aug 2020 and would be happy to answer questions for anyone who is looking for information. Please note that I had the vascular form of ES, meaning my jugular was impinged. My main symptom was intercranial hypertension which is different than the more typical form of ES and it’s symptoms (however it’s the same surgery regardless of impingement). I also struggled with neurological issues, face numbness, vision changes, dizziness, neck pain, daily headaches, migraines, etc. I’m here if anyone has questions!

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@abbyco Welcome to Mayo Clinic Connect, a place to give and get support. It sounds like you have a lot of information to share.

It took 9 years for you to get the correct diagnosis of Eagle Syndrome. You were able to improve your symptoms through surgery and you are happy to answer any questions.

It sounds like @sethm007 is looking for a surgeon. May I ask how you searched and found the doctor that did your successful surgery?

REPLY
1000piece | @1000piece | Mar 30, 2021
In reply to @vbammer "Hi, I have rescheduled for February 22. Not looking forward to surgery, but no more pain..." + (show)
@vbammer

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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Hi, I have eagles syndrome. Hope your surgery was a success. Could you please describe the neck pain that radiates towards the arm? Do you know which nerves are involved in this? I get this too, and am wondering what is causing it. Also did surgery help with this symptom?

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1000piece | @1000piece | Mar 30, 2021
In reply to @abbyco "Hello! I was diagnosed with ES after a 9 year hunt that lead me to more..." + (show)
@abbyco

Hello! I was diagnosed with ES after a 9 year hunt that lead me to more specialists than I can count. I’m reading through these posts and it seems that most people have not pursued surgery. I just wanted to offer that I had a styloidectomy in Aug 2020 and would be happy to answer questions for anyone who is looking for information. Please note that I had the vascular form of ES, meaning my jugular was impinged. My main symptom was intercranial hypertension which is different than the more typical form of ES and it’s symptoms (however it’s the same surgery regardless of impingement). I also struggled with neurological issues, face numbness, vision changes, dizziness, neck pain, daily headaches, migraines, etc. I’m here if anyone has questions!

Jump to this post

Thank you for this offer. Did surgery help with all these symptoms? I am in Canada and unable to get surgery here. It is something almost no ENTs have familiarity where I live. Also - what were you symptoms of vascular ES with the jugular vein? How did they determine the JV was compressed?

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stacybf | @stacybf | Apr 7, 2021
In reply to @rondam "I had an accident ran into a board hit between the eyes went to Urgent Care..." + (show)
@rondam

I had an accident ran into a board hit between the eyes went to Urgent Care Dr took 2 ct scans one of my head and one of facial structure when he diagnoised me with Eagle Syndrome . I am currently under a nueroligist care in Augustai drive an hour to see her. At age of 58 it was discovered i have been habing TiAs i was told if i was 80 it would be normal thst was a punch in the gut. Now i find this may be partial of the cause i also have MHFT Genetic disorder my MRI has worsened from last year so i am having a repeat Lumbar Puncture i just dont kniw what to think anymore

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My son has had severe neck pain, initially severe neck spams on the right side, overall muscle weakness, fatigue and achiness. He has been experiencing it for 5 months. The achiness still comes and goes. He says it feels like it takes more effort to swallow. He was diagnosed with stylohyoid ossification. We have been to so many doctors with different specialties. We are looking for a physician to work with. If you have a referral, we would greatly appreciate it.
Thank you

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1 reply
Erika | @erikas | Apr 8, 2021
In reply to @stacybf "My son has had severe neck pain, initially severe neck spams on the right side, overall..." + (show)
@stacybf

My son has had severe neck pain, initially severe neck spams on the right side, overall muscle weakness, fatigue and achiness. He has been experiencing it for 5 months. The achiness still comes and goes. He says it feels like it takes more effort to swallow. He was diagnosed with stylohyoid ossification. We have been to so many doctors with different specialties. We are looking for a physician to work with. If you have a referral, we would greatly appreciate it.
Thank you

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@stacybf Welcome to Mayo Clinic Connect, a place to give and get support.

I'm sorry to hear about your son's symptoms. The internet says stylohyoid ossification is caused by trauma of the cervical and throat region. May I ask if there was an accident or did your son have tonsil surgery?

You said that you were looking for a physician to work with. May I ask if you live near a teaching or research hospital or if your son is able and willing to travel for care? This may help members like @abbyco @sethm007 @christina61 @nrd1 @eastmas1 understand and support you in your search.

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1 reply
stacybf | @stacybf | Apr 8, 2021
In reply to @erikas "@stacybf Welcome to Mayo Clinic Connect, a place to give and get support. I'm sorry to..." + (show)
@erikas

@stacybf Welcome to Mayo Clinic Connect, a place to give and get support.

I'm sorry to hear about your son's symptoms. The internet says stylohyoid ossification is caused by trauma of the cervical and throat region. May I ask if there was an accident or did your son have tonsil surgery?

You said that you were looking for a physician to work with. May I ask if you live near a teaching or research hospital or if your son is able and willing to travel for care? This may help members like @abbyco @sethm007 @christina61 @nrd1 @eastmas1 understand and support you in your search.

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Thank you for your response. He is a recording artist and was singing in a very high register for several hours prior to the incidence. He had tonsillitis a year and a half ago. He is definitely willing to travel for care. All recommendations are greatly appreciated. Thank you again, Stacy

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stacybf | @stacybf | Apr 8, 2021

Thank you so much for your reply, I will look into it. Have you had success in your long search?
Stacy

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john567 | @john567 | May 12, 2021
In reply to @carolinedoubt "Anyone out there that knows anything about eagle syndrome surgery? I have been diagnosed and surgery..." + (show)
@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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My Wife has had it about 3 years ago. 1 side from the outside. It went well. She has to get the other side done now. Her surgeon does not take our insurance now, so we are trying to find another one North of the Tampa bay area.
My Wifes says she can feel it hit her Hyoid bone. I know your post was from 2018 and I hope everything went well.

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ladylove1962 | @ladylove1962 | May 14, 2021

I have had pain in my neck for the last 2 months, It is like I have food stuck in my throat. Certain foods bother it more than others. I have been to an allergist who says I have an abscess and a Maxillofacial specialist, and he says I have Eagle Syndrome! I have been on Steriods and Antibiotics for over 2 months.. no help!! It’s driving me nuts!! Anyone have the same thing?? I did have my tonsils out over 50 years ago!!

REPLY
1 reply
Amanda Burnett | @amandaa | May 15, 2021
In reply to @ladylove1962 "I have had pain in my neck for the last 2 months, It is like I..." + (show)
@ladylove1962

I have had pain in my neck for the last 2 months, It is like I have food stuck in my throat. Certain foods bother it more than others. I have been to an allergist who says I have an abscess and a Maxillofacial specialist, and he says I have Eagle Syndrome! I have been on Steriods and Antibiotics for over 2 months.. no help!! It’s driving me nuts!! Anyone have the same thing?? I did have my tonsils out over 50 years ago!!

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@ladylove1962 Welcome to Mayo Clinic Connect. I am sorry to hear about your Eagle Syndrome diagnosis. It sounds as though your physicians are taking a safe approach for treatment.
Have they talked with you about the possibility of surgery for symptoms relief?

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