Hi. I am new to this site. This morning I have been reading several of the discussions. My pain started in July 2010. Excruciating! It took only a few weeks to get diagnosed after dental visit, eye doc and then primary doc gave me the diagnosis. Then started seeing pain doctor. Tried all the meds we can think of before starting to see neurologists and neuro surgeons. In Feb. 2011 I had gamma knife surgery. I had relief for 11 months. At the end of 2011 my pain came back! Now I also have numbness and burning on that (right) side of my face. UGH!
Reading these discussions, I realize that none of my docs have told me if I have "type II or ATN". I do know that I have all 3 branches affected. Can't believe no one has said this to me.
There are good people here JO, and we try actively to be a source of reliable information and referrals. Unfortunately your experience with Gamma Knife seems fairly common. About half of all TN patients treated with GK will have pain recurrence within three years. Most of the Gamma Knife Centers don't tell patients that statistic, either -- which I personally consider to border on malpractice. What meds are you on presently, and in what doses?
I'm currently taking 1500 mg. of Gabapentin per day. The pain doc has me increasing this gradually though.
He also has prescribed a new pain med. called nucynta. Ironically I just took my first one. I have been told that I have deafferentatin pain. That is defined as "the numbness and burning caused by the GK." Of course, I still have TN.
i feel for you ... i had gamma knife and within a month the pain came back, only worse ... my neuro didnt tell me what type of TN i had and he sent me to a neurosurgeon to have the GK without trying a combo of medications ... i have learned a lot by joining this support group ... i have learned more here than with my neuro ... as always, best wishes are sent your way
Deafferention pain is caused by a lesion cutting off peripheral nerves from the central nervous system. The CNS tries to "find" the missing distribution and when it can't, it starts signalling randomly. The result has sometimes been compared to "phantom" pain and it's a cast-iron bear to treat. I'll have to do some homework on Nucynta before I comment on it...