Eagle Syndrome

Did you try Dr. Samji in San Jose, CA? I think Dr. Cognetti is in Philadelphia. Look up to verify. Just going from memory... Wishing you the best, praying for your success!

Thank you for you reply and information. I am currently trying to deal with the VA so I can see a Dr who has experience with ES.

The VA is my only source for healthcare. After years of complaint about symptoms and many test someone finally noticed I had bilateral elongated styloid. I was sent to a civilian neurologist and they had no idea, so they referred me to ENT. I told the doctor all my symptoms which are exactly the same as most of you have stated. Neck pain, headaches, weird sensation in my throat, electric shock type pain when turning head, jaw pain and a feeling of pressure in my head as if I was hanging upside down too long, popping and clicking and catching in my neck. The ENT told me none of the symptoms I mentioned were a result of ES. He further stated that ES only causes pain directly under the ear near the gland in the neck under the ear. He treated me as if I were imagining or fabricating these symptoms and dismissed everything I had said. I am at my threshold with these symptoms. I have no quality of life. The more I am up walking and moving around the worse the symptoms get. Having only VA as healthcare it took months to be able to see a doctor and I don’t even know if I can get, or how to go about getting another opinion from another doctor through the VA choice program. I cannot continue to live like this. Does anyone know of any doctors in Texas that will take me seriously and help me, and work with me through the VA? Any information will be greatly appreciated.

I was referred to an ENT Dr. In my area by the neurosurgeon the VA sent me to using the community care provided by the VA. I saw the ENT for about two minutes. I was in the middle of telling him all my symptoms and he cuts me off saying, “None of the symptoms you are describing has anything to do with Eagle syndrome,” and before I can say anything he tells me he is going to call the neurosurgeon that referred me to him and he would call me the next day and abruptly walks out of the room before I can respond. The entire appointment he had a dismissive and irritated attitude. I waited months, and navigated the difficult VA system to get this appointment. He does not call me the next day, so I called his office and left message with receptionist. Finally two days later his receptionist calls me and tells me the doctor has referred me back to the neurosurgeon that referred me to him in the first place, and gives no reason why. Now I feel hope slipping away. Bilateral Elongated styloids are confirmed and according to every source available to me, all my symptoms do indicate Eagle Syndrome, but the ENT dismissed the possibility of ES. I am scheduled to see the same neurologist I saw before the ENT on Monday. Having only the VA for healthcare, and these two doctors sending me back and forth and dismissing my symptoms as being caused by ES has me worried that I will never find help and get stuck in the sub-standard VA system and forced to endure this pain and suffering for the rest of my life. My symptoms are severe and have taken over my life to the point that I am having trouble taking care of myself. Please, if someone knows how I can utilize VA healthcare through the community care (choice program) to see a doctor out of my state, that has experience with ES, and is willing to help me, the info just may salvage my life.

I've had the surgery done in March of 2017. I have no feeling in my chin/neck on both sides all the way down to the scars on my neck where they opened me up. It was a 5 hour surgery and I had 2 drains on the outside of my neck while being in the hospital for 48 hours. It was very difficult to swallow solid foods for a very long time and I still have difficulty with it at times. I often drink out of a straw because my swallowing mechanism doesn't seem to want to cooperate without that feeling in the area. About 4 months ago the pain in my left ear started coming back, at first a dull "earache", then the feeling of a match being lit deep in my ear and sometimes like someone taking a screw driver to my ear. I started experiencing the stroke like symptoms. I'm now waiting for the results of my CT to see if the part of the process that was left in is just slightly still "ticking" my carotid. This is certainly not a fun oddball disease to have to deal with and if anyone has questions about the surgey....I would be glad to help

Does anyone also have nosebleeds and/or bloody saliva? I do not, but wanted anyone having either of these to check out nasopharyngeal carcinoma. Almost as rare and very hard to find. Not trying to add to anyone's stress, but only condition I found very similar to ES in many aspects.

I am newly diagnosed by CT scan from an ER visit. Symptoms started a year ago , but constant for the past 6 weeks. After visits with family dr, dentist and oral surgeon they think it’s in my head. Well, turns out it is in my head, but in the form of bilateral elongated styloids and densely ossified styloid ligaments that extend all the way to the hyoid bone. The ER doc actually entered the room with his medical dictionary and said he has never seen this diagnosis before and suggested that I see an ent. After calling a few locations and being told that they will not see me, I have found 1 doc at the University of Minnesota that has treated this before. They are booked out a month, but am hopeful to see some relief in the future. Has anyone experienced trouble in getting surgery approved by insurance?

All, Dr. John Milligan, ENT Phoenix Arizona is absolutely one of the best surgeons I ever been around. If you have eagle syndrome, find a way to use him. He is probably the nicest most genuine and highly skilled physicians I have ever been around. He did the surgery on my wife three weeks ago and she had horrible pain for six years and is doing absolutely wonderful now. Besides the typical after surgery issues with the scarring and damage done from the surgery, she really has no ES symptoms at all. My wife and I both highly recommend Dr. Milligan.