Hello, HopefulForCure— I'm sorry that you found this TN road, but happy that you found this site! It has been such a place of refuge and help with all things TN. Unfortunately, I found this site after 2 Gamma Knife Surgeries, and an MVD with Dr Carson. Oh, how I wished that I had seen Dr. Carson first! By the time I saw him, 4 years into TN, the 2 GK shots of radiation actually cut the TN nerve leaving me with anethesia delorosa, which is a painful numbness. Dr. Carson actually found a vessel on my nerve and used muscle from my scalp to wrap around the nerve so that it would not cause the large stabbing pains any longer. And, he succeeded! The harsh stabbing pain has not returned in some 10 years, but the damage from the GK remains. There is no hope for my nerve to get better. The only surgical option is more damage to the nerve, and Dr. Burcheil (OHSU) said that if damaging it didn't work in the past, it will most likely not work now. So I get botox shots for migraine, which actually help the TN nerve stay calm for a month or so. I rotate the meds that I'm not allergic to. This way the body cannot build up a tolerance to them. I'm on year 14, so the trial and error of medication is well established by now.
Be careful to try one thing at a time, maybe two. Jot down your reaction to the meds, pos or neg. Note how long they help the pain, and how the pain is changed when using them. I have katemine cream mixed with gabapentin and baclofen that I love b/c it is rubbed on the exact spot that hurts, rather than medicating my whole body. There are lidocaine patches that are traded off with the cream. I also walk at home on the elliptical or rebounder for two hours each day, and go to the gym 1-2x p/week.
The pain management specialist that helps me actually worked with Jenneta when he lived in Ohio. He is an anesthesiologist and has been such a life saver for me and my family. He came into the picture after the second failed GK. He explained that with younger people, the nerve can regenerate, which is what happened to me 2x. It's an amazing surgery for elderly people who cannot have invasive surgery, and who are over the age where the nerve regenerates. I now realize that damaging my body was not an answer for me. At the time of the decision, I was in so much pain and we knew so little about this, even after researching it, we opted for the easiest way to freedom.
Today I eat mostly live foods, exercise daily, do my best to stay up and on my feet, serve my family, and work part time from home. My husband is amazing, as are my kiddos, extended family and my sweet friends. It's a very rough hand to be dealt, but when we understand that we are warriors in this fight for a cure, this fight to make our lives and the lives of those around us better, we can move forward—we can win. Don't get me wrong, there are many days where I cry about this because it is unrelenting at times, but it's important that I allow my tears to flow. There is great loss here. There is great gain also.
Please friend me here on this sight if you'd like an we can talk further. Take care HopefulForCure!