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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.
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VA has a program called Community Care and you can use it for consult. Specifically state Eagle Syndrome and ask for second opinion. No one in LR picked up my consult, but I have BCBS also so my options are not as limited. Found information for Allen Presbyterian having a physician who has done ES surgery, but didn't see name. Hoping you get a turnaround in advocates for your care. Maybe you'll have successful surgery before me. Did you ever fall in military? Wondering because I fell and only have symptoms on side of my head that hit ground.
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.
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That sounds like me. I also have eagles syndrome, but I was also recently diagnosed with psuedo tumor cerebri. Which was the cause for my pressure feeling when I got my headaches. It was also the reason why it seemed the more I moved around the worse it got. The psuedo tumor is also the same reason my heart rate always ran a little high. I was always 110-105 resting. I am down to 95 resting on average now since I was started on diamox. I haven't had a headache since the diamox either. Even with as long as my ES styloids are. I still feel my styloids in there poking, making my ears hurt. I think sometimes when you have the styloids you can have other things wrong and sometimes the symptoms overlap. I don't know a whole lot about the VA, but I do know that it sounds like you aren't being cared for the way you should. I had to go to another state to find answers because no one in my state knew what eagles syndrome even was without having to do a Google search. I wish you the best. Keep looking for answers and never settle for second best!