Eagle Syndrome

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

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

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.

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!

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!

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

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!

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.....

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.

Amen!