Hi all
I am looking to find THE BEST, MOST WONDERFUL neurologist and neurosurgeon ever. I live in southern California in Ventura county. Although it would be great to find a dr in my "backyard," I am willing to go to wherever to be treated. I got the name of a dr in San Francisco-thank you! Is there anyone else out there who would happily recommend his/her dr(s)? Was just diagnosed (November 2013) with TN that is atypical with the burning and numbness on the left side of my face. I think I have recently begun to feel some tingling and light burning on the left half of my lower lip. During a flare-up my front left incisor will ache and the hard palate just behind it will go numb and tingle.
The most recent ns suggested that the term "atypical facial pain" be eliminated as too vague and a good excuse for drs to blow a patient off (I appreciated and agreed with that, as he was my 3rd ns. the second one just closed his folder and wished me good luck.), and I have seen 5-6 neurologists within the last 10 years. He also suggested that my "cluster headaches" might actually be TN-interesting. My ENT first suggested TN when the burning began shortly after my 3rd sinus surgery in 2007.
The first NS scoffed when I reported that my ENT thought I had TN. As soon as I began to describe my symptoms, he said, "no, no, no, that's not TN, maybe atypical facial pain or neuropathy from the sinus surgery." Interestingly, when he saw the MRI, he called and told me I have TN as he could see the compression on the nerve on the left side. He never said that he should have waited and listened to me.
I also have chronic daily migraine, interestingly enough, almost always located on the left side of my face and eye, and my left eye tears constantly. TN can trigger migraines and a migraine can trigger a flare up with increased numbness and pain in the left half of my upper lip, cheek, and into my left eye (of course there are many other triggers).
I cannot tolerate the side effects of meds. MVD was recommended by 2 of the 3 neurosurgeons and electrodes in my spine was suggested by another (the ns said it didn't matter what the MRI showed, I didn't have TN, just atypical facial pain). Gamma knife, rhizotomy were not recommended by any of the 3 neurosurgeons. they all believed the success rate for me would be less than 40%. and numbness would be assured for a period of time.
The other two ns offered about slightly more than 50% chance of being pain free or significantly reduced pain. They both said the surgery (MVD) is about 90% successful for just the classic TN, but mine is complicated by chronic sinusitis, etc., so it lowers the success rate, significantly. The possible side effects of the surgery were terribly frightening to me. It is a BRAIN after all. I am a speech therapist. It's very difficult to do therapy with a numb/painful lip.
Thank you for listening. I'm sure you've all heard or experienced all this before. I would greatly appreciate any referrals you are comfortable giving to me.
Wishing you well,
Camia