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!