Connect
Eagle Syndrome
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Ear, Nose & Throat (ENT) Support Group.
Connect
Go to Ent Dr, get Ct scan. My Eagles gives me constant headache in back of head , ears hurt , jabbing pain in throat , jaw pain.
-
Like -
Helpful -
Hug
1 ReactionMay I ask a question of the experts here? Please bear with me with what I share and forgive me if I’ve posted this incorrectly:
For a year and a half Ive have left-sided pain like muscles pulling in and around C1 and tongue burning non-stop…no other symptoms. Ive been through the wringer like everyone here. Imaging, meds, surgery because they thought my symptoms were from reflux, poor diagnoses, even asking ME what I’m finding online, many PTs & Chiros, exercises…the rabbit holes are endless. Ive had multiple chiros tell me there’s subluxation occurring in my cervical spine but no one can solidly agree on exactly where (C1-C4). One of my PTs says C1 is the culprit (which I can feel it protrudes more on the painful left side) another PT is less than happy about the C3/C4 mobility, a third PT agrees to C3/C4 mobility issues. I’ve also had many muscular issues in my neck. No other issues, mild C6/C7 degeneration (normal for my age), no other falls, injuries, rotation is pretty good, etc
Here’s the fun part: I’ve recently just gotten an email response from my pain mgmt doctor that both Styloids are “definitely longer than normal” but the right is longer than the left (my left side is problematic) and in great doctor fashion, he shared little details like size. He did say it was hard to see what was causing the pain from the image (CT with contrast) and seems unwilling to further investigte. Only that he’s going to reach out to colleagues for injection options if I choose. You can imagine, I’m livid at the lack of detail and it sure doesn’t feel like an official diagnosis given Ive only had one consult with him.
I know ES symptoms can be broad, often times asymptotic and I’m not looking for a diagnosis here, but I am curious about any input on my scenario you might have. I don’t know what else to even ask the doctors at this point.
Hello @tjmhawk, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I know it has to be difficult not finding any answers and an official diagnosis and the lack of details. I'm not sure if you have seen this article on elongated styloid process syndrome (Eagle's Syndrome) but it may give you a better understanding of the response from your pain management doctor.
ELONGATED STYLOID PROCESS SYNDROME (EAGLE'S SYNDROME): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5529782/
Have you thought about seeking a second opinion at a major teaching hospital or health facility like the Mayo Clinic?
-
Like -
Helpful -
Hug
1 ReactionThank you for replying. I’m awaiting a response from my pain mgmt doc to get a referral to the U of M for an adequate diagnosis…there’s a surgeon there who’s familiar with ES. I know Mayo may be able to diagnose however, they no longer treat it so it seems useless to travel there. In the meantime, I will continue neck strengthening exercises with the hope that this is more of a muscle imbalance as it could very well be at this point. Fingers crossed, prayers prayed. 💜
-
Like -
Helpful -
Hug
1 Reaction@abbyco I would love to talk more about your experience. I just got diagnosed with the same thing by Dr. Hepworth and I have so many questions!
Did you have any luck finding a doctor at MUSC Charleston?
I was found to have eagle syndrome, by accident. I was in the ER with INSANE left sided throat and neck pain, they did a CT scan and the raiologist stated that my styloids were elongated, which corresponds to eagle syndrome. This was over 7 years ago, and i only got attacks that bad like twice a year. now im having crazy neck pain, headaches, dizziness, ear pain, pain when i turn my head, etc.... I live in NY, I need relief from this....Who do I go to....both my ENT's, have NO experience in eagle syndromes. Please help!!!!
Hello @bambu46422, Welcome to Connect. I know it's extremely difficult to find help when you have such a rare condition as Eagle Syndrome. There is a site that was referenced earlier in this discussion which may be helpful in locating support and finding some relief.
Living with Eagle Patients Support Community: https://livingwitheagle.org/
@abbyco @1000piece and @christina61 may have some suggestions to share with you. Can you ask your ENT or doctor if they have any suggestions for finding help such as a nearby teaching hospital or major health facility?
-
Like -
Helpful -
Hug
1 ReactionI had surgery for Eagle Syndrome on right side and have to do on left side to so far doing good will see how good is it going to be with left side,,,took over a year to find out what was wrong with me even my doctor told me all my symptoms are made up and nothing is wrong with me,,,If you feel seek don't let doctor tell you nothing is wrong with you follow yours guts,,,
If you have money the best ENT to do surgery is here in Idaho state he did mine and I do feel great it was right side and unfortunately I have to do left side to in December
-
Like -
Helpful -
Hug
1 Reaction