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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sann | @sann | Aug 8, 2019

I was recently diagnosed with Eagle’s Syndrome after 2 years. I saw Dr Joseph Scharpf at Cleveland Clinic and he performs several of these per year. He seems great and when I decide the time is right for surgery, he will be my guy. I am very interested in hearing from folks who have had the surgery through the neck, what were the after effects?

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sann | @sann | Aug 9, 2019
In reply to @empy "Hi, John, I am recovering from my 3rd surgery. 1st one done by ENT internally and..." + (show)
@empy

Hi, John, I am recovering from my 3rd surgery. 1st one done by ENT internally and did not help much. Second on same side 5 years later externally. Very successful. 5 days iuy from External on the other side. Some facial paralysis expected to clear up in a few weeks. I just found this site. I do not see much activity or answers. There is another more active forum. The dotors list was updated in 2017 and now there is a doctor discussion tab. I am not sure about doctors in New York, but 2 excellent ones in Philadelphia. ENT 's are not the best option. Doctors who are head and neck oncologists and specialize in SKull Base Surgery have the most experience. They remove tumors from the skull and sometimes must remove the styloid to get the tumor. Eagles is not as rare as pepple think, but it is not common. There is much more literature about it online in the last five years. My surgeon teaches and he is using my case for teaching purposes. The other eagles website has a very active forum

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Where is the other online forum?

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abby4paige | @abby4paige | Aug 9, 2019

Good morning, The other group that was very helpful to me is Bens Friends https://www.bensfriends.org
There are so many fantastic people willing to share their experiences. I was able to find a head/neck surgeon at the U of M in Minnesota. To my knowledge he is the only surgeon in the state that does a Styloidectomy. I have bilateral elongation and complete calcification of both ligaments. I had my first surgery in May 2019. Recover is difficult at times, but my pain is gone. The only residual effects I have is that I have partial numbness in my ear and part way down my jaw, but I will happily take that in place of the pain. Please visit Bens Friends, you will be amazed at the support and information.

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linda21 | @linda21 | Aug 11, 2019
In reply to @jenlink "@abby4paige I am also in MN and about to lose my mind trying to find a..." + (show)
@jenlink

@abby4paige I am also in MN and about to lose my mind trying to find a dr that will help me! I think the problem is that so few dr's have a clue about ES so they tell us all it's in our head and we shld seek counseling or my favorite..... you just need physical therapy and reduce your stress! UGH!!!!! I recently had several medical professionals within the same office tell me that they don't believe in ES causing pain!!! And I needed to look into a more mind and body approach to heal myself!!! Tell that to the bone and calcification in my neck that keeps me up at 3:00 AM and is destroying my life!
Did you make it to your appt at the U of M? Curious to hear about your experience if you did and who you saw!

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I’m also being told that.. it’s been 6 months of Doctors telling me I’m ‘the picture of perfect health’. Finally, last week, a new female ENT told me it MAY be Eagle’s Syndrome and I’m getting a CT scan on Monday.. I’m 99% sure I auto-diagnosed myself months ago but nobody would listen. Wishing you the best on your recovery!

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2 replies
abby4paige | @abby4paige | Aug 15, 2019
In reply to @linda21 "I’m also being told that.. it’s been 6 months of Doctors telling me I’m ‘the picture..." + (show)
@linda21

I’m also being told that.. it’s been 6 months of Doctors telling me I’m ‘the picture of perfect health’. Finally, last week, a new female ENT told me it MAY be Eagle’s Syndrome and I’m getting a CT scan on Monday.. I’m 99% sure I auto-diagnosed myself months ago but nobody would listen. Wishing you the best on your recovery!

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Did you have your CT yet? I was really surprised that after the radiologist diagnosed me from the CT, that I couldn't fine 1 ENT specialist that has any experience with Eagles. They told me that they have only seen it in medical books, but have never met anyone in person. I was very thankful to have found Dr. Ondrey at the U of M. He is the only surgeon in MN that I am aware of that has treated Eagles. My best to you!

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1 reply
clara01 | @clara01 | Aug 17, 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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Where did you have your surgery?

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sann | @sann | Aug 18, 2019

For those of you who have had the surgery what are the after effects? Do you have nerve damage?

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Moderator
Lisa Lucier, Moderator | @lisalucier | Aug 19, 2019
In reply to @linda21 "I’m also being told that.. it’s been 6 months of Doctors telling me I’m ‘the picture..." + (show)
@linda21

I’m also being told that.. it’s been 6 months of Doctors telling me I’m ‘the picture of perfect health’. Finally, last week, a new female ENT told me it MAY be Eagle’s Syndrome and I’m getting a CT scan on Monday.. I’m 99% sure I auto-diagnosed myself months ago but nobody would listen. Wishing you the best on your recovery!

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Hi, @linda21 - I also wanted to welcome you to Mayo Clinic Connect and find out what you may have learned from the CT scan?

@clara01 - do you also have a diagnosis of Eagle Syndrome? What symptoms have you been experiencing? It would be great if @hoping could return and share more about where the surgery took place.

@de9g - you'd mentioned previously you were feeling stuck due to a disagreement on diagnosis. Has anything changed at all with that situation?

@jackiejean - How are you doing? Did you end up having surgery?

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2 replies
linda21 | @linda21 | Aug 19, 2019
In reply to @lisalucier "Hi, @linda21 - I also wanted to welcome you to Mayo Clinic Connect and find out..." + (show)
@lisalucier

Hi, @linda21 - I also wanted to welcome you to Mayo Clinic Connect and find out what you may have learned from the CT scan?

@clara01 - do you also have a diagnosis of Eagle Syndrome? What symptoms have you been experiencing? It would be great if @hoping could return and share more about where the surgery took place.

@de9g - you'd mentioned previously you were feeling stuck due to a disagreement on diagnosis. Has anything changed at all with that situation?

@jackiejean - How are you doing? Did you end up having surgery?

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Hi Lisa. The CT scan showed that I have bilateral stylohyoid ligament calcification. My right side (which is much more bothersome than the left) is actually 1.1cm longer than the left side (1.6cm vs 2.7cm).
I’m looking to get a consult with Dr. Samji in San José, CA to get the surgery as my symptoms hace gotten progressively worse. They are: pain in throat, pain inside ear, pain behind ear and down neck and back, pain in jaw that is also extending up to my face/eye socket. All is this on the right side.
Question: does anyone know if the surgery can be done on both sides on the same day?

Keep pushing for the diagnosis, fellow ES crew! ❤️

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1 reply
linda21 | @linda21 | Aug 19, 2019
In reply to @abby4paige "Did you have your CT yet? I was really surprised that after the radiologist diagnosed me..." + (show)
@abby4paige

Did you have your CT yet? I was really surprised that after the radiologist diagnosed me from the CT, that I couldn't fine 1 ENT specialist that has any experience with Eagles. They told me that they have only seen it in medical books, but have never met anyone in person. I was very thankful to have found Dr. Ondrey at the U of M. He is the only surgeon in MN that I am aware of that has treated Eagles. My best to you!

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CT scan came back and, of course, it’s Eagle Syndrome!

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