Thanks to all who have shared their stories, it helped me to find a DX and eventually get the right treatment. Now I feel as if life can go on as planned. I want to share my story so that it may help someone, like the stories that helped me. My story is a little different but basically the same.
I am a 36 year old male; when my symptoms started I was 34. Here is the basic time line: woke up with a swollen right eye, nothing visibly wrong, no redness, no infection, doctor was a little perplexed. The eye resolved itself and then about a week later I woke up with what I thought was an ear infection. Again, nothing that the docs could see; no redness, no infection. At this point the right side of my face was also numb, mainly around the right corner of my mouth and around my right eye.
Had first MRI about a month or two after the symptoms started, nothing was apparently wrong. At this point my symptoms where: Constant dull aching, burning in my right ear followed by episodes of an ice pick in the right ear canal which felt about two inches straight into the ear canal. Then I would have flare ups on the right side of my face, with the epicenter of the pain seeming to come from my right ear canal and would radiate outward to the right side of my face, mostly effecting my right I eye. I was then DX with Atypical TN.
After that DX I was put on a gambit of neuroblockers, with Tegretol being one of the worst. None of them really helped the pain, and made my life miserable. The only thing that helped at all was narcotics, which just took the edge off.
My new neurologist asked for another MRI and this time it revealed a vascular loop compression to support the ATN DX. I was then referred to UVA for Gamma knife. They were confident that they could relieve some of the facial pain, but none of the ear pain. I told them that the ear pain was constant and that is what I needed relief from, and that I could live with the face pain and numbness. The doc at UVA asked if anyone had ever mentioned Geniculate Neuralgia? My wife was with me, thank God, because it was such a short comment that I really wasn’t paying attention. She stopped the Doc and asked him to repeat what he said. On the way home my wife googled Geniculate Neuroglia (GN). That’s when we found other people who had similar symptoms closely lined up with mine.
From these blogs we found Dr. Gardner and his nurse Lois at UPMC. I asked my neurologist for a referral to UPMC after my wife talked to Lois and was given a tentative appointment and surgery time for about a month out. My neurologist gave me the referral and I worked with Lois and my insurance company to make sure everything was lined up. Dr. Gardner wanted a very specific MRI done which I had done in my home town and sent it to Lois.
I arrived at UPMC and they lived up to the hype. Even my mother, who is a nurse as well, was very impressed with the hospital. Went to the pre-op appointments that Dr. Gardner and Lois had scheduled for me. Then I saw Dr. Gardner; he said my symptoms were Atypical GN but he saw the problems on the new MRI. He told me that he was 90 to 95 percent confident that he could relieve the sharp stabbing pain and he was 50 percent sure he could relieve the constant burning pain.
At this point I would have tried anything, so I said let’s do it. And two days later I went into surgery. I decided not to look at the surgery on youtube, but my wife did and there are many videos, but for me it was better not to know all the details.
Anyway, I woke up from the surgery in more pain than I could have imagined. My neck felt like I had the worst whip lash ever, and then a MMA fighter was putting his knee on my neck. That lasted four days. Now I am about two weeks past surgery, and the results have been AMAZING. No sharp shooting pain. Little to no constant pain, which is very livable and seems to continue to get better as the ear fullness goes away. The ear fullness was a result of the surgery which they warn you about beforehand and the say can last up to approx. 6 weeks. My ear fullness is almost gone, my energy is getting back to normal, and discombobulation is almost back to normal and only brothers me if I push myself too far. I have been walking the track a lot. I feel like my hearing is the same as before. For the first couple of days my hearing would cut out just for a second, like someone pushed the mute button, but that only happened for the first couple of days and I was told it is very common. I truly feel in a week or two I will be back to 100%, which I never thought possible.
From the first symptom to surgery, the process was over 18 months. I read on here before that someone wrote never to give up. I thought that was kind of BS, and was feeling hopeless at times. But thanks to my friends and family, especially my wife, they wouldn’t let me give up and now I am very optimistic for my future. So, take it any way you want, but you shouldn’t give up. I know for the others out there who have suffered for years+ that is going to sound like BS, but they are making new discoveries every day, and they don’t fully understand everything yet. For example, one of the reasons my docs were so confused was my symptoms were affiliated with face pain and numbness which I was told are completely different nerves and that there was nothing in common. Well guess what? I now have no face pain and no numbness since right after the surgery; in fact it was the first thing that was noticeable to me.
Sorry for the long post but I wanted to help, like so many of your posts helped me. Take care and good luck, Tyler.