Hi there. I need some support. I feel like I am never going to find any help. I was diagnosed last february with eagle syndrome. My left styloid process is at a strange angle, and was protruding through the tissue into my throat. The doctor was removing my tonsils when it was discovered. Prior to this he told me it was a neoplasm growth and that he would remove it during the tosil surgery. When he realized it was not a neoplasm growth, I went in for yet another ct scan. He admittedly told me that he had never seen this condition before. Needless to say, he never even removed my right tonsil because of this discovery, (though he said it was necessary prior to surgery). He did not remove the entire styloid process. He shaved off the end poking through my throat, and sutured over it. In doing so, he sutured the back of my tongue to my soft pallette pulling the left side of my throat down close to my tongue. It’s very uncomfortable, and am having swallowing issues because of it. This doctor has an ego for days, and got upset with me when I insisted my throat wasn’t right, and told me it was normal and to stop being so “hysterical and anxious” about it. He didn’t want to even see me for a follow up appt even considering it was a rare condition that he had never encountered before. He told me to email him a picture of my throat. I’ve been abandoned and ridiculed. My symptoms all started at the same time, tinnitus, extreme ear plugging with hearing loss, neck pain, feeling of something stuck in my throat, and now I can feel where the bones is underneath my jaw. It feels like its just floating around in there. I’m terrified it will cause bigger problems without a competent doctor with knowledge about eagles syndrome for care. I’ve tried to go to the teaching hospital here in Denver thinking they would be interested in it, seeing that it is so rare, but so far I”ve been treated pretty badly because my surgeon informed them that I was a problem. I am sure to cover his own incompetancy. I keep getting passed around the various different types of ENT’s who tell me they aren’t the correct type after being referred by one of their other ENT’s. Not one of them have listened to me about my diagnosis, and dismiss me if I say anything about it. I even had one very condescendingly tell me, “Don’t you mean the hyeloid bone”? and informed me there isn’t such thing as a styloid bone like I was just making stuff up. He even wrote it in my notes in my chart. I’ve never felt so defeated and frustrated in my life. I am in tears most days. I have been sent for hearing tests, and told it was hearing loss due to age, and various other misdiagnosis’s for my symptoms. Help!!! Is this typical for eagle syndrome paitients? and if so, what do you suggest I do or say to get heard and treated correctly? I’m tired of being treated like I’m a hypochondriac, a problem patient. Thanks for listening…nobody else can relate to my frustration about this.
Dear Krista, I am so very sorry to hear of your heart-wrenching experience with your doctor and the medical system, and their lack of knowledge about Eagles syndrome and many other medical issues actually. It is so disheartening to hear you have been labelled in such a way, when it really reflects their lack of understanding. I have had symptoms of Vascular Eagles syndrome for probably at least 20 years, but got so severe and life-limiting for the last 7 that I’ve been taking gabapentin ever since, and though I kept seeking an answer, was pretty much relegated to “it’s all in your head, you need to rewire your brain”. Even though my doctor is actually a family friend, he was just hard headed and unaware of Eagles syndrome all these years. I very much relate to your experience.
I’m going to let those more experienced answer to your symptoms, I’ve only recently received a diagnosis, at long last, and have surgery scheduled next week for bilateral styloidectomy. After I come through this I might have more to say, at this point I’m just trying to get through the day. I did want to reach out and let you know you are not alone. Sending love and prayers to you, and I hope you find some answers soon, and some competent help.
Heather
Hi @Kristak - I gave a brief answer in your post on another thread but now that I’ve got more of your symptoms details will highly recommend you contact Dr. Hepworth’s office.
•Dr. Edward Hepworth, Denver Sinus Care, 3150 E 3rd Ave, Denver, CO 80206 (720) 899-9489, FAX (720) 953-5151, email: info@denversinuscare.com or for initial consults - kcurry@denversinuscare.com.
The fact that you have hearing loss among your symptoms could point to internal jugular vein compression as I also had that symptom & believe it was IJV compression that at least contributed to it. Unfortunately, it took 9 years after my hearing loss started before I found the IJV compression by the remains of my left styloid & C1 & there are other complicating factors so the decompression surgery & revision styloidectomy Dr. Hepworth did for me last fall haven’t helped much, but he is sticking with me & continues to try to help me get some hearing restoration. It’s best to send an email to Kristen Curry, the ofc manager, describing your symptoms & the botched surgery, & requesting a consult w/ Dr. Hepworth. Your initial consult in his ofc will be with one of his NPs followed by an ultrasound of your internal jugular veins at Health Images the next day & a face to face consult w/ him on day 3. He’s booked out pretty far so you’d have to wait a while but he’s very compassionate, kind & knowledgeable about ES & it’s many symptoms & would definitely support you not send you away feeling unheard & uncared for.
You ARE NOT a hypochondriac or problem patient. I applaud you for trying to advocate for yourself even if you were shot down. You’ve suffered at the hands of a doctor who did an incompetent surgery & damaged your character/reputation by what he wrote in your medical record in his office. That is very unprofessional & even questionable ethically.
I’m so sorry that you’ve been treated like this, it’s appalling, especially now you’ve been labelled on your notes as being difficult… I agree that if you can see Dr Hepworth, as he’s very experienced with ES it’s better than keep trying different ENTs who are ignorant about it. I don’t know too much about complaints procedures in US hospitals as I’m UK, but it does sound as if you have grounds for that! We do have a section with advice about advocating for yourself, you must be really strong to keep fighting after the way you’ve been treated, but maybe there’ll be some useful info in there for you:
Latest Patient Self Advocacy topics - Living with Eagle
Sending you & hug & hoping you can get seen by Dr Hepworth 
@Flowergirl , best wishes for your surgery next week, prayers and hugs for you too
Thank you dear @Jules prayers and your kind words are very much appreciated 
