Quote:
Originally Posted by jmurphy46254
Hello there anyone and everyone.... I have been to about 10 doctors, ENTs, Neurologists, dentists, and saw a neurosurgeon last week. The neurosurgeon is convinced that I have GN, but has tried to scare me out of surgery. He is telling me that I may have vertigo so bad, I may never walk again. He also says that he only does the surgery when people are on the verge of suicide. After 11 years of this pain, I am just about there. I've been on almost every anti-depreesant and seizure medicine known to modern science and nothing has worked yet.
Has anyone had this surgery? Did you get the same scary odds? I have been looking on the net for some more info on the risks, but haven't found anything as profound as the neurosurgeon is saying. A big problem for me..... He is the only one who does this surgery for hundreds of miles. I'm desperately looking for the facts on the risks of the surgery for GN. Can anyone point me to a good source of info?
To the original author... Sounds like you had a great doctor and experience. It is astonishing to me that you got an accurate diagnosis and treatment so quickly. I wish I would have been diagnosed correctly when this started for me. I have been told I had Menieres Disease, Atypical Migranes, Atypical Cluster Headaches, Temporo-Mandibular Joint Dysfunction (Ruled out), Tooth Decay (Ruled Out), My ears were too clean (seriously), but mostly I was told, I don't know whats wrong with you....Sorry."
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Have you been to a maxiofacial surgeon? Also, have the doctors you have visited sent you to get any tests? Brain stem tests? MRI? I agree that 2 months is REALLY fast! I started having symptoms this past June and went to an ENT, 2 Maxiofacial surgeons and 1 neurologist and was just diagnosed with GN last week. I started trileptal and it seems to be dulling most of the pain. I still am feeling horrible after talking all day. I did also find out that I have arthritis in my jaw and TMJ which is adding pressure to the GN (nerve 7). I came to this board because it's just good to know that I am not alone. This disorder I have found to be very isolating. I don't think any one else understands the pain. I constantly want to feel like taking a q-tip to my ear...it's like an annoying throbbing sensation that doesn't stop.
