Hi Jessica,
Sorry to hear about your pain. Did a Neurosurgeon diagnose you with the atypical GPN? I think the atypical kind is identified as just not the text book case, with symptoms varying out of the range of normal symptoms, hope that makes sense. Dr. Tew, a Neurosurgeon diagnosed me with the atypical kind, and said the MVD surgery usually does not help this type. BUT, I went to a Dr. Jametta in Pittsburgh, since he was the Dr. who invented this surgery. Found out he and Dr. Tew, once worked together. They are both older, but pretty sure Dr. Janetta is retired by now and should have been when he did my third MVD. I guess for some with this pain, like myself, would do anything to make this pain go away but after the second surgery I should have given up, since the last one I had in Dec. of 2006 caused the left side of my face some paralysis, and deaf in left ear, with balance problems. I just had eye surgery to repair the damage over time that resulted from the third try. The Dr. accidentally cut the 7th cranial nerve which controls balance, and hearing on that side of brain. It also caused paralysis of my left face, which has somewhat resolved. It may have been worth it if this surgery would have helped with the pain, but it did nothing. I'm not sure why Dr. J even thought he could fix the problem since they say with the atypical type, that MVD probably, well usually does not work. BUT, that was in 2006, things may be different now. I had hysterectomy in 2000, the night of my surgery, shortly after waking up, my GPN pain was pretty strong, for the first time. It was strange telling the nurses I had throat and Left ear pain, after a hysterectomy, lol. I don't think I'll ever forget that night! I guess the reason you have an atypical diagnosis is because of your headaches, that sounds a little different? Although the pain on your face near eyes, sounds more like trigeminal? Is the pain on one side? Usually with these neuralgias the pain affects one side. I've heard Trigeminal and GPN can go together. I guess I would ask your Dr. if the headaches could be from the stress caused by chronic pain in throat and ear? They say this type of pain can become worse with stress, anxiety or even when you don't feel well. I notice this now, when I have say a stomach flu, my pain goes up x's 10. So maybe one is causing the other, just never heard of headaches from either neuralgias. So, maybe if the pain is more superficial it possibly could be trugeminal also? But this also affects one side, around mouth, along one side of face, one side of eye, or forehead. This is true with migraine headaches though too, as far as it being on one side, but with migraines they can alternate sides, as for these neuralgias, affect only one side only, but maybe for the few who are lucky could have this on both sides, that would be rare though. Before my hysterectomy I had migraines, but ever since that surgery, I guess w/o hormones now, my migraines have stopped, wow what a trade off! I didn't think they could see the nerves on an MRI or any test, but maybe today? Dr. Tew diagnosed mine, saying it was atypical GPN, by swabbing the back of my throat with a viscous xyllocaine, which numbed the pain for several minutes, or until it washed off, so he prescribed this for me. It really didn't work long term. At times the pain is so bad, my eye, inside nose, and roof of mouth just on left side feels as if it is on fire. I cannot say it is electrical but more as if acid is in throat, L ear, L mouth, and nose. The best way for me to describe pain is as if I had an ice cube on areas affected for too long, where it burns, I guess like frostbite would feel like, just hot? Also, my gag reflex on left side is absent, but right side is strong. Dr. also had me close my eyes, them took a needle and lightly tapped face beginning on one side going from left to right or visa versa. We then noticed that when the needle tapped the middle of my nose, I either felt the pain, or didn't, depending on which side he was tapping. In my case, I didn't feel the sharp tap on left side until it got to the middle of nose, then towards the right side there was pain. To this day I'm not sure if that was a symptom of GPN or something different. Not sure which diagnosis that Dr. gave me, lol! I I've seen so many Dr.'s since 2000, with different diagnosis, but more than one said my pain and numbness sounds as if I had a mid brain stroke during hysterectomy, but even that did not show up on any MRI or test. My pain is more constant, not just when swallowing now, although when it first began it came and went, every 3-4 weeks or so, but then the pain became closer and closer, till today when it is rare that I don't have one day w/o pain. Seems like anything cold makes it worse, esp being out in the cold wind.
Not sure this is helpful, since after three tries of MVD I wonder if it is GPN, but during all three surgeries, they did find areas where the nerve was looped many times, but in different areas. They didn't see the twisting on any MRI or photo first, and Dr. told me when the GPN is involved it's impossible to follow the entire nerve from brain stem to end. I guess its possible there were areas they couldn't see, or get to? Who knows, but today, and I am sure tomorrow, this pain from a hysterectomy will always be a puzzle.
You'll have to reply, maybe comparing symptoms can answer both of all of our many questions, for others also, hopefully! Good luck with finding a Dr., just don't settle for one you don't feel is answering your questions. I have heard they have advanced this treatment even since 2006. I traveled to 3 different states for answers, but still have same pain today. I used to work as a nurse but the weird thing is today, I hate going into a hospital or Dr.'s office, as before I really enjoyed what I did, guess life really does go in a full circle. Try to be patient but persistent.
Hang in There
Kat
it is in my future - I will keep fighting for answers for myself and others