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Eagle's Syndrome

Posted by @travelgirl, Wed, Apr 25 8:58am

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?

REPLY

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.

@carolinedoubt Welcome to Connect I see your a new member. Eagles syndrome is very rare. Were you told you had to have surgery? Or was that just an option?
My son is still leaving that out there as an option.

We were told by 2 different dr's to only do the surgery if absolutely necessary. Which means if it is life threatening or blocking your throat from food going down. Then it would to be done.. Cause the surgery can really mess up your face.

We also sought out 2 different DR's in 2 different states that had the most practice with this kind of surgery. One a Dr at Uf Strands Hospital in Gainesville, Fl and the other Dr was in Columbus, Ohio. The Dr in Columbus actually was a Medical Professor who trained other Dr. about Eagle's syndrome.

Surgery should be your very last resort. My son was 28 when he was diagnosed. It took several years to even figure out what he had. It has been 5 yrs. It bothers him on and off.

You really need to think about whether, or not you really need the surgery? Or can it be treated another way? Most DR's have done very few surgeries. So the room for error is high I think? They better really know the facial nerves and muscles cause one wrong cut could be seriously damaging.

This site Living with Eagle's Syndrome lists some Dr's that have treated patients. I told my son we would need to see them all on the list to figure out which one we could trust. Case the two we met both said to make the surgery the last resort for treatment.

This Dr list is 3 years old on this site.

https://www.livingwitheagle.org/t/4-10-15-updated-doctor-lists/774/41

If I can help you in any other way please feel free to contact me. Maybe we both can follow each others symptoms to help ourselves?

I wish you the best.
Jackie

Hello, I'm curious to know what symptoms you have experienced, it's a terrible affliction but i realize it could be much worse so i'm thankful but I feel like it's difficult to tell what's related to this syndrome and what isn't. I have a pain in the side of my neck when i turn my head too fast, it's like plucking a guitar string, but it's a nerve and it is both strange and painful. Sometimes I have weird feelings in my throat, dryness, the odd pain here or there, a feeling of a lump, it's all just so annoying. I'd appreciate if there are others that would share their symptoms to see if we share the same or different ones. thank you very much. David

@davidmth

Hello, I'm curious to know what symptoms you have experienced, it's a terrible affliction but i realize it could be much worse so i'm thankful but I feel like it's difficult to tell what's related to this syndrome and what isn't. I have a pain in the side of my neck when i turn my head too fast, it's like plucking a guitar string, but it's a nerve and it is both strange and painful. Sometimes I have weird feelings in my throat, dryness, the odd pain here or there, a feeling of a lump, it's all just so annoying. I'd appreciate if there are others that would share their symptoms to see if we share the same or different ones. thank you very much. David

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Hello David. Welcome to Mayo Clinic Connect.

I'm sorry to hear that you suffer from the symptoms mentioned above. Have you been diagnosed with Eagle's syndrome? If so, was surgery mentioned as an option? @carolinedoubt mentioned above that surgery was an option for her. Caroline, did you opt to have the surgery?

@davidmth

Hello, I'm curious to know what symptoms you have experienced, it's a terrible affliction but i realize it could be much worse so i'm thankful but I feel like it's difficult to tell what's related to this syndrome and what isn't. I have a pain in the side of my neck when i turn my head too fast, it's like plucking a guitar string, but it's a nerve and it is both strange and painful. Sometimes I have weird feelings in my throat, dryness, the odd pain here or there, a feeling of a lump, it's all just so annoying. I'd appreciate if there are others that would share their symptoms to see if we share the same or different ones. thank you very much. David

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@davidmth,thanks for sharing your symptoms. Please see my detailed note above.
I have found it difficult to describe my symptoms to my local EENT specialist. I got a strange feeling that she did not believe me or made me feel as if I was a hypochondriac.
I am a healthcare provider myself and found her reaction very disheartening.
In retrospect, I can understand the rare nature of this condition and the lack of frequent exposure to the symptoms involved.

@davidmth

Hello, I'm curious to know what symptoms you have experienced, it's a terrible affliction but i realize it could be much worse so i'm thankful but I feel like it's difficult to tell what's related to this syndrome and what isn't. I have a pain in the side of my neck when i turn my head too fast, it's like plucking a guitar string, but it's a nerve and it is both strange and painful. Sometimes I have weird feelings in my throat, dryness, the odd pain here or there, a feeling of a lump, it's all just so annoying. I'd appreciate if there are others that would share their symptoms to see if we share the same or different ones. thank you very much. David

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@davidmth Your symptoms sound similar to what my son experiences. My son complains a lot about the clicking and poking he feels in his throat. He also can feel the lump of the styloid.
Are you under care of a DR? You may need a Ct scan.
They watch my son's progression to make sure it isn't poking near an artery.
I am not sure about the dryness though. My son has not complained of that.
Wishing you the best.
Jackie

Hi – I too was diagnosed with this today. So scary, I left the doctors office in a fog. Now i wonder if my carotid artery is at risk… my symptoms aren't enough to warrant surgery at this point – want to hold out as long as possible if not forever hopefully. I work at a desk with two monitors 8 hrs a day so i just wonder if the tension and inflammation in my neck muscles caused this to occur as i have never had any issues until I started this job 5 yrs ago. Please offer any feedback you may have. Thanks so much:)

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.

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?

@shakila18

@davidmth,thanks for sharing your symptoms. Please see my detailed note above.
I have found it difficult to describe my symptoms to my local EENT specialist. I got a strange feeling that she did not believe me or made me feel as if I was a hypochondriac.
I am a healthcare provider myself and found her reaction very disheartening.
In retrospect, I can understand the rare nature of this condition and the lack of frequent exposure to the symptoms involved.

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I understand that feeling. It has occurred to me also doctors not believing me or thinking I’m strange. It can be very disheartening.

@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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No, I have not had any orthodontic work.

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

@hoping @rondam @jackiejean So sorry you are all going through this. It is very rare to have eagles syndrome. So few people have this disease. I posted above a list of Dr's who treat eagles syndrome. If I can offer any advice. Please make sure whoever you deal is a TOP SPECALIST in the dealing with Eagles Syndrome.
Here is another site I found with advice, tips and lists of Dr's people have used to treat eagles syndrome.

This site Living with Eagle's Syndrome lists some Dr's that have treated patients. I told my son we would need to see them all on the list to figure out which one we could trust. Case the two we met both said to make the surgery the last resort for treatment.

This Dr list is 3 years old on this site.

https://www.livingwitheagle.org/t/4-10-15-updated-doctor-lists/774/41

I wish you all the best.
Jackie

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