Eagle's Syndrome

Posted by Jackie, Volunteer 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?

Liked by de9g

@jchristophersen

All, Dr. John Milligan, ENT Phoenix Arizona is absolutely one of the best surgeons I ever been around. If you have eagle syndrome, find a way to use him. He is probably the nicest most genuine and highly skilled physicians I have ever been around. He did the surgery on my wife three weeks ago and she had horrible pain for six years and is doing absolutely wonderful now. Besides the typical after surgery issues with the scarring and damage done from the surgery, she really has no ES symptoms at all. My wife and I both highly recommend Dr. Milligan.

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What was the ‘damage done from the surgery’?

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

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@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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@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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@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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@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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I'm still a little stuck, but have a call in to doctor in Louisiana and hope he will accept me as his patient. Spine Team says definitely have an issue with stylohyoid.ligament and that's ENT territory. Meds have not worked except the meds that make me sleepy so I only take at night. Wake up with same pain. Hopefully, nurse calls back soon.

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He has anybody found relieve from this condition with medications?

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@sann @jchristophersen @clara01 @linda21 @lioness @mommyg33 @jealink @keetee @abby4paige @debdeb12 @de9g @theeaglehasland @alcorreia0123 @empy @brooklyngirl @melb777

I want to thank you all for coming to the this site and sharing all your heartfelt stories.
I have had a busy last few months with my move and work. so I have not had a chance to comment.

I started this feed for Son, and others who was diagnosed with Eagle's Syndrome. I love the fact that so many of you are all helping each other. Your stories are all truly heart wrenching. There is nothing worse than being in pain and Dr's not certain as to what the cause or how to treat you. I feel it is scary to just have them guessing or looking at us like we are crazy. That is exactly how my Son felt for 10 yrs till he was diagnosed.

My son has not gone through any treatments. He has done every natural treatment he can find. Because the few Dr's he saw scared him off of surgery. Told him to hold off as long as he can.

Now what he has done may not work for everyone. So you will still need to consult with your DR's. He has gone on a complete health food eating kick. Limiting any milk products and meats from his diet. He keeps himself very slim. He even started practicing yoga. He feels when he gains weight, he notices this aggravates his eagles syndrome. I know he needs another CT scan to check on the Styloids , and compare to his last set. He has not done that yet, Hoping he does that soon! This way I can give you all an update.

I saw some of you posted a couple of other support groups. https://www.livingwitheagle.org/c/bens-friends and https://www.livingwitheagle.org/. I believe they are both linked together.There is a link on that site to a list of Dr's that people have gone too.

I honestly do hope, you all see at least a few Dr's, to get some good second and third opinions on treatments, My Son saw 3 Dr's. One being at Cleveland Clinic which has been a few years ago now. Cleveland Clinic, at the time did not have a Dr on staff that treated Eagles Syndrome.

I noticed a post by someone, that they now do offer treatment. That is wonderful to know thank you so much for sharing.

My Son saw a Dr. at UF Health Stands Medical in Gainsville and another Dr in Dayton Ohio.
I am praying you all feel some relief soon.
Blessing you all.
Jackie

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@travelgirl

@sann @jchristophersen @clara01 @linda21 @lioness @mommyg33 @jealink @keetee @abby4paige @debdeb12 @de9g @theeaglehasland @alcorreia0123 @empy @brooklyngirl @melb777

I want to thank you all for coming to the this site and sharing all your heartfelt stories.
I have had a busy last few months with my move and work. so I have not had a chance to comment.

I started this feed for Son, and others who was diagnosed with Eagle's Syndrome. I love the fact that so many of you are all helping each other. Your stories are all truly heart wrenching. There is nothing worse than being in pain and Dr's not certain as to what the cause or how to treat you. I feel it is scary to just have them guessing or looking at us like we are crazy. That is exactly how my Son felt for 10 yrs till he was diagnosed.

My son has not gone through any treatments. He has done every natural treatment he can find. Because the few Dr's he saw scared him off of surgery. Told him to hold off as long as he can.

Now what he has done may not work for everyone. So you will still need to consult with your DR's. He has gone on a complete health food eating kick. Limiting any milk products and meats from his diet. He keeps himself very slim. He even started practicing yoga. He feels when he gains weight, he notices this aggravates his eagles syndrome. I know he needs another CT scan to check on the Styloids , and compare to his last set. He has not done that yet, Hoping he does that soon! This way I can give you all an update.

I saw some of you posted a couple of other support groups. https://www.livingwitheagle.org/c/bens-friends and https://www.livingwitheagle.org/. I believe they are both linked together.There is a link on that site to a list of Dr's that people have gone too.

I honestly do hope, you all see at least a few Dr's, to get some good second and third opinions on treatments, My Son saw 3 Dr's. One being at Cleveland Clinic which has been a few years ago now. Cleveland Clinic, at the time did not have a Dr on staff that treated Eagles Syndrome.

I noticed a post by someone, that they now do offer treatment. That is wonderful to know thank you so much for sharing.

My Son saw a Dr. at UF Health Stands Medical in Gainsville and another Dr in Dayton Ohio.
I am praying you all feel some relief soon.
Blessing you all.
Jackie

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Strangely, I agree with your son. Though still undiagnosed after 20 years I have more balance issues when I gain 10lbs so I try to keep down and keep salt intake low. Why no diagnosis you ask, have had more than six diagnoses in past 3 years, but each one taken back. Seems like ligament calcification ES, but doctor said there is no test for ligament. I'm not giving up. Waiting for an ES specialist to accept me as a patient..

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