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

@elimpert96

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!

Jump to this post

Hello John, I really feel for you and will keep you in my prayers for a neurosurgeon to come to your rescue.

REPLY
@de9g

Hello John, I really feel for you and will keep you in my prayers for a neurosurgeon to come to your rescue.

Jump to this post

Thank you and May GOD Bless you and keep you and yours. Please let me know how i can pray for you or your family. Thanks again!

REPLY

My wife has been diagnosed with Eagle Syndrome and am trying to find a surgeon in the Phoenix area. Does anyone know of one? This was finally diagnosed after nearly six years of pain/suffering and want to get the surgery done. Thanks in advance…..

REPLY

I'm not greedy. If the surgery is 50% successful I will feel 100% better because the failed diagnosis beats you down. Doctors seem to love the depression diagnosis and the array of meds to "treat" depression and anxiety. I will post when I get a surgery date. I'm thankful this thing has a name. I'm hopeful I will feel better soon. And I stay prayerful everyone's treatment will ease the painful symptoms so you have more enjoyment from simple things like dancing without losing your balance when the music is on and enjoying the silence when the music is off.

REPLY

Amen!

REPLY

@elimpert96 welcome to connect. I am so sorry you are going through all the pain. My son goes through episodes where it really bothers him.
Have you ever had a CT Scan? If your throat is closing up like that, you really need to seek out a Dr that has done several of these surgeries.
It is serious surgery.
I attached in one of my prior posts another site that lists doctors who others have gone too. I know UF Health Shands hospital in Gainsville has a team Of Drs who work with Eagles Syndrome.
Here is the other site you can meet others like you.

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

Let know how this works out for you?
I wish you the best..
Jackie

REPLY
@jchristophersen

My wife has been diagnosed with Eagle Syndrome and am trying to find a surgeon in the Phoenix area. Does anyone know of one? This was finally diagnosed after nearly six years of pain/suffering and want to get the surgery done. Thanks in advance…..

Jump to this post

@jchristophersen
So sorry about your wife..
Have you contacted Mayo Clinic in Phoenix?
That maybe a good start.

Also here is a link to another site that has lists of doctors who others have used in the past.

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

I wish you and your wife the best.
Jackie

Liked by jchristophersen

REPLY
@travelgirl

@elimpert96 welcome to connect. I am so sorry you are going through all the pain. My son goes through episodes where it really bothers him.
Have you ever had a CT Scan? If your throat is closing up like that, you really need to seek out a Dr that has done several of these surgeries.
It is serious surgery.
I attached in one of my prior posts another site that lists doctors who others have gone too. I know UF Health Shands hospital in Gainsville has a team Of Drs who work with Eagles Syndrome.
Here is the other site you can meet others like you.

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

Let know how this works out for you?
I wish you the best..
Jackie

Jump to this post

Thank you @travelgirl… Yes i have had tge ct confirming an elongated/overly calcified stylo process but dr's still don't want to address it and when they do they say they'll make it worse if they do operate. Can't get much worse than it is though. The past few months feel like years to me. I appreciate your response and am most grateful for the list! I have an emg nerve conduction on my face on tuesday @ the Neurosurgeons which im sure will show some results but my problem is the Neurosurgeons dont know anything about Eagle syndrome and the ENT surgeons don't want to entertain the idea of me having such a rare condition. We'll see what happens next week. Thank you again, I will look through the list!

REPLY

I, too, had symptoms long before anyone could diagnose them. Then finally in front of third ENT – and he orders CT scan – telling me that he doubts it will be it. He called me back with results and tells me that I have the longest styloid he has ever seen. Surgery on right side. Went in through the mouth, so no facial scarring at all. However, I do now have a scar in the back of my throat that sometimes feels funny. Mucus seems to surround it and I have to clear my throat a lot. Now my left side is getting bad. Lots of pain and the tinnitus is a bit overwhelming at times. I'm just here looking to see if any Minnesota doctor has taken on this specialty at all.

REPLY

Where did you have your first surgery? From what i understand the surgery done from inside the mouth is less invasive but typically doesn't remove all of the styloid to the underside of the jaw. No scar would be nice but I would gladly have a battle scar if it got rid of my symptoms. A lot of my pain is under my jaw and in my ear. I too have crazy tinnitus. My doctor is sending me to a neurologist before he will consider surgery. Another month, another test. My diagnosis was noted on my CT scan when they thought I had issues from a sinus infection.

REPLY
@elimpert96

Thank you @travelgirl… Yes i have had tge ct confirming an elongated/overly calcified stylo process but dr's still don't want to address it and when they do they say they'll make it worse if they do operate. Can't get much worse than it is though. The past few months feel like years to me. I appreciate your response and am most grateful for the list! I have an emg nerve conduction on my face on tuesday @ the Neurosurgeons which im sure will show some results but my problem is the Neurosurgeons dont know anything about Eagle syndrome and the ENT surgeons don't want to entertain the idea of me having such a rare condition. We'll see what happens next week. Thank you again, I will look through the list!

Jump to this post

Your story sounds like mine. All the best to you.

REPLY
@sarajosie

I, too, had symptoms long before anyone could diagnose them. Then finally in front of third ENT – and he orders CT scan – telling me that he doubts it will be it. He called me back with results and tells me that I have the longest styloid he has ever seen. Surgery on right side. Went in through the mouth, so no facial scarring at all. However, I do now have a scar in the back of my throat that sometimes feels funny. Mucus seems to surround it and I have to clear my throat a lot. Now my left side is getting bad. Lots of pain and the tinnitus is a bit overwhelming at times. I'm just here looking to see if any Minnesota doctor has taken on this specialty at all.

Jump to this post

@sarajosie. That's great concerning the first surgery. Symptoms Don't sound too bad for having a successful Eagle S. Op though. I was curious if you wouldn't mind sharing the name and location of the surgeon that operated? I am sorry to hear about your new symptoms on the opposite side but hopefully they may have been caused bye some type of trauma or strain that you didn't realize at the time and hopefully, Lord willing they will go away and you can avoid another painful operation. I know there are many types of Eagle S and that may not even be relevant for you. Sorry, I guess just wishful thinking…. I do thank you for your reply as it does give me a great deal of Hope! I was at first skeptical of the oral surgery having read that it requires an initial tonsillectomy beforehand and also causes decreased accurate visibility for the surgeon to operate safely during an already dangerous procedure. Thank you again and know that your story does give me hope! I will pray for you and the peace you deserve!
P.s. again please share the name and Dr. That Operated on you if you feel comfortable doing so. May God Bless You!

REPLY
@brooklyngirl

Your story sounds like mine. All the best to you.

Jump to this post

@brooklyngirl…. I know that the list of doctors provided by @travelgirl is posted above. I was able to go through and find some near me, though I have not contacted them yet as I am waiting for the results of the neurosurgeons EMG conducted on my face.(even though they claim to know nothing about Eagle syndrome. Lol.). I'm sure still though that that information would be helpful to and if, I find somebody that will physically help me.

I would like to share with you the small amount of information that I know (so far as Internet research is concerned), in regards to the two types of surgeries offered for Eagle Syndrome, which still may indeed be far less information than many others on this site can provide you, though nonetheless may be helpful to you.

So from what I have read, the oral surgery first requires an initial tonsillectomy surgery beforehand and also vastly decreases visibility for the surgeon to operate safely during an already extremely dangerous procedure. It may be the less invasive of the two options but may not be the most accurate.
The other option from what I have read will leave a pretty rough scar (however if you're in the same boat as I am, a scar is pretty much welcomed if accompanied with a successful surgery), but the surgery must be performed through the side of the neck extending inward even further to reach the styliohoid(sp) process and is also very very dangerous considering the location of both the Carotid artery's proximity, and the shear amount of nerve impasses that pass-through the same point of operation. I do believe operation through the neck yields a great deal more visibility and as you stated probably a greater chance of removing the entirety of the problem. Probably a little more bloody and yes, will leave a scar but may be the better way to go….and for many years was the only way to go.

Also keep in mind that there are several different types of Eagle syndrome and each may require unique surgical techniques of their own (if to be successful) once surgery is underway.

From what I have read. Oral surgeries to correct Eagle syndrome are somewhat new and therefore if wished done correctly as I suppose with any Eagle syndrome operation must needs be done by an experienced Eagle S. surgeon. And that my darling seems to be the problem that we all have, finding an experienced surgeon willing to take the leap of faith to save and help the lives of those in need without the risk of failure and lawsuit plaguing him or her.
It's my opinion and maybe I'm just being a little bit ignorant, but I believe that all ENT/Neurosurgeons, at least experienced and leading ones in leading medical institutions, should be aware of all of the conditions surrounding their field (even rare ones). Sadly as we can all see from the messages in these forms, that's just not the case. I live in Baltimore, Md. and you would think that John's Hopkins University would be able to deal with an issue or at the very least be able to competently identify an issue that they claim to know about and yet don't have the slightest clue concerning it's true symptoms! Sorry to rant…It's just frustrating…

I will keep you in Prayer and I hope things improve.
Just in case you didn't see it here the List of Dr.'s mostly known to be experienced with this rare condition. This List comes with much thanks from me via @travelgirl. (Thank You Travelgirl)

Again I will prayer for
your healing and faith! May GOD Bless You @brooklyngirl and thank you for your thoughts and wishes for me.

REPLY
@elimpert96

@sarajosie. That's great concerning the first surgery. Symptoms Don't sound too bad for having a successful Eagle S. Op though. I was curious if you wouldn't mind sharing the name and location of the surgeon that operated? I am sorry to hear about your new symptoms on the opposite side but hopefully they may have been caused bye some type of trauma or strain that you didn't realize at the time and hopefully, Lord willing they will go away and you can avoid another painful operation. I know there are many types of Eagle S and that may not even be relevant for you. Sorry, I guess just wishful thinking…. I do thank you for your reply as it does give me a great deal of Hope! I was at first skeptical of the oral surgery having read that it requires an initial tonsillectomy beforehand and also causes decreased accurate visibility for the surgeon to operate safely during an already dangerous procedure. Thank you again and know that your story does give me hope! I will pray for you and the peace you deserve!
P.s. again please share the name and Dr. That Operated on you if you feel comfortable doing so. May God Bless You!

Jump to this post

I went to Dr. Graves in Minneapolis Minnesota. He did tell me that he wasn't sure if I would have to have my tonsils out during my surgery, he wouldn't know until he was in there. He didn't. So I had the surgery, and still have my tonsils. The stitches didn't stay in, however, so there was about a month of a very big hole in the back of my mouth/throat. My tinnitus on the right side is reduced significantly as well as the pain behind my ear. But the back of my throat drainage/mucus is bothersome sometimes.

REPLY
@sarajosie

I went to Dr. Graves in Minneapolis Minnesota. He did tell me that he wasn't sure if I would have to have my tonsils out during my surgery, he wouldn't know until he was in there. He didn't. So I had the surgery, and still have my tonsils. The stitches didn't stay in, however, so there was about a month of a very big hole in the back of my mouth/throat. My tinnitus on the right side is reduced significantly as well as the pain behind my ear. But the back of my throat drainage/mucus is bothersome sometimes.

Jump to this post

@sarajosie Do you have post nasal drip? or allergies that you have a drainage ? I have post nasal drip I cant blow my nose instead it goes down my throat that's why I ask.? A ENT Dr. would be able to know I would think

REPLY
Please login or register to post a reply.