My mother has been suffering for 3 years with ATN. She has tried every medication possible to help treat her intense burning facial pain which is primarily in her right side lower lip area.
She has had a mental neurectomy, 2 Balloon compressions and nerve blocks. She was told by a neurologist in Detroit that she probably has post herpatic neuralgia and MVD could help her, then we were told in Canada that no, MVD would do nothing for her.
Her diagnoses has been very vague. Facial pain, neuropathic pain, myofacial pain, TN, ATN, post herpetic neuralgia ect.... Nothing has helped, even with the strongest of narcotics like methodone. Her doctor insists that this evolved from her autoimmune/mix connective disorder.?? And that infact she will have to suffer for the rest of her life.
My mom is ready to throw in towel, I have tried to help her in everyway possible, she feels that she is not being heard by her medical community and now she is short of brain surgery (deep brain stimulation) as of July 2011. She is very hesitant of this procedure because it has a 40% success rate. Not very high considering they are drilling into your skull and adding wires and a monitor to manage her pain. But if it doesn't work then they will have to go in again to remove the hardware. I need help to help her. I hope someone here can give me some suggestions. Thank you so much.
Im sorry to hear your mother is in so much pain. I cant imagine how difficult it is. I noticed that you are asking for help and that there is no replies. It isnt because the community is helpful but rather that this is a really difficult case and beyond most of our knowledge of the diesease...
I see you guys are from Canada . . . me too, I also suffer from extreme burning in my face, mainly my gums and lip on the left side. I know from experience gabapentin and lyrica did not help me, the only releif I have had is from low dose methadone 10 mg 3x a day and cipralex, its for anxiety but seem to help my pain, I tired going off it cause I was feeling so good emotionally but the pain came back worse so Im back on that too. I find the methadone is the biggest help for me and I cannot tell I am on it what so ever. The other meds had huge side effects. The surgeon say I am not a candidiate for surgery, my nerve damage may be from trama cause by a large skull base tumor. I survived that because of the TN pain, TN saved my life.
I hope this helps your mom, maybe she can ask the doctors if it may be of help for her.