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

I've had the surgery done in March of 2017. I have no feeling in my chin/neck on both sides all the way down to the scars on my neck where they opened me up. It was a 5 hour surgery and I had 2 drains on the outside of my neck while being in the hospital for 48 hours. It was very difficult to swallow solid foods for a very long time and I still have difficulty with it at times. I often drink out of a straw because my swallowing mechanism doesn't seem to want to cooperate without that feeling in the area. About 4 months ago the pain in my left ear started coming back, at first a dull "earache", then the feeling of a match being lit deep in my ear and sometimes like someone taking a screw driver to my ear. I started experiencing the stroke like symptoms. I'm now waiting for the results of my CT to see if the part of the process that was left in is just slightly still "ticking" my carotid. This is certainly not a fun oddball disease to have to deal with and if anyone has questions about the surgey….I would be glad to help

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I have also been diagnosed with Eagle Syndrome and am scheduled for surgery January 4th. It took two years to get diagnosed. I am in pain constantly and feel like I have something stuck in my throat. The surgery is to take two hours with a good percent that it will relieve all my symptoms. Just not to thrilled with having my neck cut into. I have calcification in styloid not elongated.

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@mindyf

I've had the surgery done in March of 2017. I have no feeling in my chin/neck on both sides all the way down to the scars on my neck where they opened me up. It was a 5 hour surgery and I had 2 drains on the outside of my neck while being in the hospital for 48 hours. It was very difficult to swallow solid foods for a very long time and I still have difficulty with it at times. I often drink out of a straw because my swallowing mechanism doesn't seem to want to cooperate without that feeling in the area. About 4 months ago the pain in my left ear started coming back, at first a dull "earache", then the feeling of a match being lit deep in my ear and sometimes like someone taking a screw driver to my ear. I started experiencing the stroke like symptoms. I'm now waiting for the results of my CT to see if the part of the process that was left in is just slightly still "ticking" my carotid. This is certainly not a fun oddball disease to have to deal with and if anyone has questions about the surgey….I would be glad to help

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Why did they have a drain from your neck. My doctor is telling me my surgery will be outpatient.

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@vbammer

Why did they have a drain from your neck. My doctor is telling me my surgery will be outpatient.

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I had to have both sides of my neck done due to calcification of the whole styloid on both sides. I was in the hospital for 72 hours. During the surgery I had 2 ENT doctors and a cardiovascular surgeon there because it was pressing on my carotid causing stroke like symptoms. They put drains on both sides of my neck while I was in the hospital to drain the blood and fluids out from my incision sites. It was quite the ordeal really. The pain and swelling after the surgery was pretty intense. What ended up being a 2 hour surgery turned into a 5 hour surgery. The main surgeon for the surgery had stated that they had never seen a case where the whole entire styloid was calcified

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@mindyf

I had to have both sides of my neck done due to calcification of the whole styloid on both sides. I was in the hospital for 72 hours. During the surgery I had 2 ENT doctors and a cardiovascular surgeon there because it was pressing on my carotid causing stroke like symptoms. They put drains on both sides of my neck while I was in the hospital to drain the blood and fluids out from my incision sites. It was quite the ordeal really. The pain and swelling after the surgery was pretty intense. What ended up being a 2 hour surgery turned into a 5 hour surgery. The main surgeon for the surgery had stated that they had never seen a case where the whole entire styloid was calcified

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Your experience sounds horrible. I hope mine is not like that. I am at the point that my quality of life due to discomfort is affected. I have a nasal cyst that is being removed as well while I am under surgery. I will post back when I am done to share with others my experience with the surgery.

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@bitoberry Welcome to connect.. My son was in his mid 20's when he was diagnosed. He has been complaining for years about it Took a ling time and him actually having to iritate the area in order for him to get a Dr. to order a CT scan. What prompted you to seek help?

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@travelgirl

@bitoberry Welcome to connect.. My son was in his mid 20's when he was diagnosed. He has been complaining for years about it Took a ling time and him actually having to iritate the area in order for him to get a Dr. to order a CT scan. What prompted you to seek help?

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Hi, I had a foreign body sensation in my throat on one side. I also have pain in my neck on the same side. After going through a sialendoscopy and tonsillectomy a CT with contrast was done for persistent symptoms. I am getting surgery, but had to delay due to a family tragedy. I will post after surgery on hopefully my elimination of symptoms.

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@travelgirl

@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

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It is now 2019, are there any additional doctors. I saw Dr Lakhani in Lakeland, Florida and he was rude and Pooh poohed my symptoms because mine are not elongated, just calcified

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@pam71

It is now 2019, are there any additional doctors. I saw Dr Lakhani in Lakeland, Florida and he was rude and Pooh poohed my symptoms because mine are not elongated, just calcified

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Mine is calcified and not elongated. I would look for a otarlongist. My doctor is David Ludlow out of Metro in Cleveland Ohio.

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@hoping

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.

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I also have the popping sound in my neck. I have an ENT who feels that it might be eagles syndrome but he keeps sending me to other specialist to rule out anything else. I have pain on/off for years but never consistent until 8 months ago. I had a minor cold with body aches that left me in bed for one day but the symptoms persisted. The side of my neck, and under my jaw feels like my glands are swollen and about to get the flu. My ear radiates pain, I have muscle spasms in my neck and now my tooth sensitivity is through the roof. Sometimes all symptoms are there at once, sometimes it varies and is erratic. A CT scan confirms the calcified elongated styloid process and the ENT was able to feel in from the inside. (I do not have tonsils). An MRI showed two bulging disk but the neurological surgeon said my symptoms do not relate to the disk issue. Some people say to hold off on surgery for a long as possible but at 57 the pain is a quality of life issue. I have another specialist to see on 1/31 then I loop back to my ENT to hopefully make a decision on what to do. Good luck to you.

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@vbammer

I have also been diagnosed with Eagle Syndrome and am scheduled for surgery January 4th. It took two years to get diagnosed. I am in pain constantly and feel like I have something stuck in my throat. The surgery is to take two hours with a good percent that it will relieve all my symptoms. Just not to thrilled with having my neck cut into. I have calcification in styloid not elongated.

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Hi
I have been thinking about you
And wondering if you were able to your surgery rescheduled.

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@brooklyngirl

I also have the popping sound in my neck. I have an ENT who feels that it might be eagles syndrome but he keeps sending me to other specialist to rule out anything else. I have pain on/off for years but never consistent until 8 months ago. I had a minor cold with body aches that left me in bed for one day but the symptoms persisted. The side of my neck, and under my jaw feels like my glands are swollen and about to get the flu. My ear radiates pain, I have muscle spasms in my neck and now my tooth sensitivity is through the roof. Sometimes all symptoms are there at once, sometimes it varies and is erratic. A CT scan confirms the calcified elongated styloid process and the ENT was able to feel in from the inside. (I do not have tonsils). An MRI showed two bulging disk but the neurological surgeon said my symptoms do not relate to the disk issue. Some people say to hold off on surgery for a long as possible but at 57 the pain is a quality of life issue. I have another specialist to see on 1/31 then I loop back to my ENT to hopefully make a decision on what to do. Good luck to you.

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Yes, Hoping for the best. I have read it’s wise for the ENT’s to make sure the pain isn’t from anything else before scheduling a styoidectomy.

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@hoping

Hi
I have been thinking about you
And wondering if you were able to your surgery rescheduled.

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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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@brooklyngirl

I also have the popping sound in my neck. I have an ENT who feels that it might be eagles syndrome but he keeps sending me to other specialist to rule out anything else. I have pain on/off for years but never consistent until 8 months ago. I had a minor cold with body aches that left me in bed for one day but the symptoms persisted. The side of my neck, and under my jaw feels like my glands are swollen and about to get the flu. My ear radiates pain, I have muscle spasms in my neck and now my tooth sensitivity is through the roof. Sometimes all symptoms are there at once, sometimes it varies and is erratic. A CT scan confirms the calcified elongated styloid process and the ENT was able to feel in from the inside. (I do not have tonsils). An MRI showed two bulging disk but the neurological surgeon said my symptoms do not relate to the disk issue. Some people say to hold off on surgery for a long as possible but at 57 the pain is a quality of life issue. I have another specialist to see on 1/31 then I loop back to my ENT to hopefully make a decision on what to do. Good luck to you.

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Your symptoms sound similar to mine. My ENTs did a sialendoscopy first, then a Tonsillectomy. It was a CT Scan with contrast that found my Eagle Syndrome. Two horrible surgeries later then they find it. The radiologist didn't even see it, they only saw cyst in nose. My ENT took my disc and kept moving it forward and backwards and said "how did I miss this". If I didn't fight with him for over 30 minutes he may have never looked more closely. I have relief of symptoms when I swallow when people usually have pain when swallowing. My calcified ligament is pressing on my nerve all day. My symptoms would come and go for about two years. Now my symptoms are cconstant.I am on maximum Tylenol and Motrin just to make it through my work day.

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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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