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

@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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Yes, huge help thanks. Tonsillectomy 😵. I had that done this past year. That is a painful recovery. I am getting the external surgery. They are also removing cyst from nose. I am so happy to hear your symptoms are gone. I do not know what it is like to live w/o discomfort. Happy for you and happy for me soon. What a rare thing to have.

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@vbammer

Yes, huge help thanks. Tonsillectomy 😵. I had that done this past year. That is a painful recovery. I am getting the external surgery. They are also removing cyst from nose. I am so happy to hear your symptoms are gone. I do not know what it is like to live w/o discomfort. Happy for you and happy for me soon. What a rare thing to have.

Jump to this post

Yes Thank you. It is nice to be without pain. I praying for the same for you also. I really hope a doctor has or a researcher has compassion on those that suffer and more is found out about this disease.

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@vbammer

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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I am so sorry that you had to go through all of that before the diagnosis. From what I hear and read, that happens frequently. The symptoms change according to how I spend my day and what nerve or vessel the ligament is pressing into. I appreciate your feedback and good luck!

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@hoping

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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That's what the ENT said – lets cross the Ts and dot the I(s) and rule out anything and everything else. Its so rare that it seems its the only what to approach this.

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@brooklyngirl

That's what the ENT said – lets cross the Ts and dot the I(s) and rule out anything and everything else. Its so rare that it seems its the only what to approach this.

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We have to take charge of our own health care or no one else will, we know our bodies better than anyone. Prayers

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@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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Yes, I have ~ uppers, front six teeth. Had them done several years ago.

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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

Jump to this post

So happy to hear your symptoms improved and you're on the mend. Do you mind sharing your doctor and where you had your surgery? I see an ENT tomorrow and am convinced I'm in the same boat 🙁 Swallowing has been an issue off and on for a year or so. I assumed I was eating to fast, however two weeks ago I began with a sharp pain on my left side (below my jaw and ear). After researching extensively, I can check yes to all symptoms 🙁 Hoping to her from you 🙂

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Hello Everyone! Recently diagnosed with Eagle Syndrome after more than 20 years of symptoms. Now I am in the waiting process between getting 2nd opinion, getting needed approvals and getting on surgery schedule. I understand why some would not have surgery at this point, but I'm way past that time. I have right side headache, earache, pressure, hearing loss, neck pain,
anxiety, increased heartbeat when laying down and now problems in mouth and throat and will take the surgery option.

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Hi de9g. I am so sorry to hear. I have most of what you describe and its a real quality of life issue. The head neck surgeon I am working with wants me to get a third opinion but in all the waiting it seems like things are getting worse. I am in NYC. I wish you all the best.

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You are right, absolutely a quality of life issue! I do not understand the 3rd opinion request unless it is with a doctor who is familiar with ES. Otherwise, the 3rd opinion doc may want a 4th opinion. Wishing all of the best for a successful resolution!

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@meliss

So happy to hear your symptoms improved and you're on the mend. Do you mind sharing your doctor and where you had your surgery? I see an ENT tomorrow and am convinced I'm in the same boat 🙁 Swallowing has been an issue off and on for a year or so. I assumed I was eating to fast, however two weeks ago I began with a sharp pain on my left side (below my jaw and ear). After researching extensively, I can check yes to all symptoms 🙁 Hoping to her from you 🙂

Jump to this post

I went to several ent’s but the Dr. Who finally helped me was Dr. Lentch is in Charleston, SC.
He was up front and he turns about 80% away. It’s so rare for both the patients and the doctors. But he was very concerned for his patients and tries to help. At least he doesn’t just dismiss you. Hope it helps

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Hi Everyone, Just wanting to check-in and see how you all are feeling and doing since posing about Eagles Syndrome? Have anyone had treatments or surgery since they last posted? @carolinedoubt @davidmth @shakia18 @jackiejean @hoping @faithandhope @rondam @bitoberry @mindyf @vbammer @pam71 @brooklyngirl @meliss @de9g
Please share how you all are feeling.
Thank You
Jackie

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My 2nd CT scan is next week and my 2nd opinion is in one month. I will update as we get further in the process. No one rushes into having surgery, but over 20 years of symptoms, dozens of medications and increasing pain have me ready to get real pain relief and not just meds to hide the pain.

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Please help….My name is John. I have personally been dealing with very symptomatic Eagle Syndrome for about 6 months. I cannot swallow on the left side of my throat and have lost all of the muscle mass on my left jawline and upper neck due most likely to nerve damage. My entire left side of my face lights up in pain with every heart beat as i can feel every palpitation in my jaw and neck. The pain at many times is unbearable and is so intense that my heart is reacting by skipping a beat and raising my blood pressure. I cant eat, drink, sleep, swallow, or even turn my head to the side fully without horrible pain. My symptoms have continued to worsen and I believe surgery may be necessary but i cant find a doctor that will accept the fact that I'm dealing with Eagle syndrome. Despite 3 ER visits, imaging showing an overly calcified and elongated styliohoid process, and almost every associated symptom of Eagle Syndrome, I still cant find a single local ENT surgeon that is willing to accept that i am suffering from this rare condition. I read your response about your son and am desperate to know of any info on knowledgeable doctors you may have consulted with in any state! I am a 33 year old otherwise healthy male. I am very aware of the surgical dangers and I know that it must be a last resort but I may be running out of time to delay any longer no matter the risk! I really need a decent doctor that is willing to operate if things get any worse for me. Right now i dont have one and like i said I'm running out of time. I have a great many other symptoms from this not listed here but for the sake of not wasting both our time, I hope you will believe me at my word when I say I've researched enough and been to every doctor, neurosurgeon, ENT, ect., to have ruled out everything else and to know that this is as i was told in the ER, Eagle Syndrome. I cant explain the frustration of months and months of suffering only to have each doctor just pass me off to the next with a question mark. Either they are unfamiliar with Eagle Syndrome altogether or in the case of even the Johns Hopkins ENT's so ignorant of the real symptoms from a lack of knowledge on the condition and/or so unwilling to believe that i could have this rare genetic condition at the age of 33 that they refuse to accept the truth. I begged the 2nd ENT I saw to at least consider surgery if it was absolutely necessary and he told me he would only make things worse if he attempted surgery. He told me out of 100 people he's seen that thought they had Eagle Syndrome, only 2 actually had it…. I Don't think he operated on either. I am desperate for any other info you may have on qualified doctors familiar with this condition. Please respond at your earliest convenience. Thank you and May GOD Bless you and your family.
P.S. I will keep you and your son in my prayers and I hope you are both in Good health when you receive this. I have yet to go through the link you had attached but will do so immediately following this reply. Thank You again!

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Hello, just joined the site today to access info and reply to a post i read from last year. I didnt know there were so many others dealing with the same issue. My above post was directed to one woman but i would love any help from anyone with answers regarding qualified doctors willing to actually address Eagle Syndrome. Please See my above post for my story. I believe it will still be visible above this post. Thanks!

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