Hello and thank you so much to all who responded to my post regarding my confusion re: TN diagnosis. I have possibly been in a remission as I haven’t had the burning, except mildly, for a few weeks. My upper lip is still numb, and when I lightly touch it, I feel a little buzz or tickly flutter at the outer corner of my left eye. Very weird. Anyway, I attended a facial pain symposium in early February at UCLA. All the big wigs from there were in attendance. Listened to all and took copious notes. One of the neurosurgeons, one who said that he didn’t see any TN, and recommended a spinal stimulator, did not recognize or remember me. Oh well, I’m sure he sees a lot of patients, so I’m not offended.
I also spoke with another NS and radiologist there who both said they would be happy to review my MRIs and reports and give me their opinion. However, once the NS found out that I’d seen her colleague (mentioned above), she did not want to see me. Instead, she offered me a phone consult. She called me a day after the appointed day and told me that neither she nor the radiologist saw any TN, and that I was in very good hands with her colleague (NS mentioned above). I told her that I was now REALLY confused because two NSs said and showed me the TN, and two said they didn’t see anything at all and strongly doubted the presence of TN. so, 50/50. I told her I wasn’t sure where to go from here, and she suggested that since I’d been to so many NS s and out of state, that I make a decision, and then go from there.
I spoke with my neuro when I got my most recent botox therapy for chronic migraine, and she suggested (as my friends and I suspected) that there may be some politics involved as the NS I spoke with was new on staff. She suggested I go to the head guy, Dr. Martin UCLA, and he would not be bothered about previously seen colleagues
The question still remains for me…do I have TN or not???
Oh, and the painful tooth? Well, seems that the molar next to it broke in half about 2 weeks ago, and the pain is much reduced, although not altogether gone. My dentist suggested that the previous dentists may have worked on the wrong tooth, and didn’t see the crack in the very back molar right next to it. Perhaps it was referred pain. AND, that the originally worked on molar may still be tender because there may well still be a crack in the broken molar next to it. So, maybe not bilateral TN…
Bottom line–still confused, and now feel kind of silly about this whole TN business. Since I’m not in nearly as much pain as I was a couple of months ago, I am wondering if I’m making much ado about nothing. Not sure if it’s the smart way to go, but I’m thinking of waiting to see if the pain gets worse and more frequent, then start looking again, in desperation…Lip is still numb and uncomfortable, especially doing my speech work, but I didn’t get ANY confirmation that the numbness is due to TN from anyone. Thanks again for listening. I wish you all a pain free night and day tomorrow.
Camia