Eagle Syndrome

@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?

@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

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

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.

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.

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.

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

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.