Has anyone heard of or been Dx with Ernest Syndrome

This has been a really long year for me, with several different differential diagnosis, however, for the first time since this all began almost one year ago I think I may have finally gotten the correct diagnosis. You see I hit my head a year ago, but the way I did it was truly like clothes lining my own head. My head suffered some injury but the bigger injury was to my neck where it connects to the base of my skull right by the jaw line. Wtihin two weeks of this I developed what they thought at first was TN type1, but within months the pain had spread to my jaw, my temporal area and then to the other side of my face, etc.. I would see one doctor who would send me to another one and that one would send me to another one, with all of them saying something different. I have been diagnosed with TN, TN1, TN2, ATN1, bilateral ATN, geniticulate, unknown facial and ear neuraglia, referred pain from cervical stenosis and buldging discs.

So, finally today I went to see a new neurosurgeon who was looking at fixing my neck with the hopes of fixing my problems. Once again he decides that my neck is not the problem he begins to tell me that it sounds alot like glossopharngitis or maybe eagles synrome, so we then talk about these diagnosis and he then says to me well you actually do not quite fit either of these, but you do have symptoms from each of them along with ATN. So, as he is reading about these he comes across this syndrome called Ernests syndrome and how it mimics all of these other syndromes, so he begins to read it aloud to me and THERE IT IS!!!! It is as if someone was reading this year of my life right down to the way they describe the deep ear pain, where the pain in the mandible joint is so severe, the temporal headaches the severe neck and shoulder pain, the pressure behind the eye, the phantom tooth pain, the pain and trouble swallowing especially cold liquids, soar throat, TMJ pain and clicking, and voice and throat problems, it was all there, except for the head pressure behind the ear and being able to lay on that side of my head, but the doc said this is your problem and the treatment is very easy it requires anesthetic blocks into the ligament in the mandible area and if that does not work then they go in and cut the ligament and the pain is all gone, it also usually happens after a head and neck injury so this must be me and so now once again I am being sent to a neurosurgeon who deals with Ernest syndrome and Eagles syndrome I am to see him on Oct. 22nd and I cannot wait to see him, but I am very scared that he will tell me like all the rest that this is not what I have and we go back to square one, all because of those few symptoms that do not go with this, so I am asking if there are any of you on here that have been diagnosed with this or know more about it and if so can you please tell me your story or what you know about it?

Thank you,

Jolie

Hi Jolie, I have never heard of it, however I wanted to say I’m so pleased for you that you just might have found a correct dx!! I send you positive thoughts and pray the treatment for this makes a huge difference in your life! ((( hugs ))) Mimi

I just wanted to say maybe the head pressure is from having it for so long???

Hello Jolie,This is a shot in the dark at reaching you as I see you posted three years ago.I think ,from all my research that I have Ernest plus Eagle syndrome.How did you find a neurosurgeon who deals in Earnest and Eagle syndrome? And how did you get on three years ago?All the best and thank you if you do see this and reply!