I had yet another follow-up with my neurologist this afternoon and we agreed to slowly increase my dosage of gabapentin from 300 mg 3 times daily to 800 mg 3 times daily. He suggested that I not drive for a couple of weeks due to the expected side effects of the increased dosage. If this doesn't help we're going to add another medication called Lamictal. Apparently he no longer wants me to take narcotic pain medication. I didn't actually ask for it because I don't want to be labeled as a drug seeker, but I did mention that it brings my pain down a few levels and he did not seem to care. Additionally, he has referred me to a neurosurgeon with an office two hours from where I live for a consultation about glycerol injections. He doesn't feel that I will be able to tolerate the medication side effects and says that other patients have had good luck with these injections. The thought of that scares me. Has anyone else had good (or bad) luck with them? How much do they cost? From what I've read, the procedure requires an anesthesiologist so it couldn't be cheap.
From what I've learned in coming here for many many months of research -
Many here have had it done -- put in search box - I think there is a group here under the groups tab for those who had it done with mixed results. Research allllll you can in the next 3 weeks here and in the book below!
If you ever want to consider MVD -- I would advise against it
as nerve damaging procedures make percentage of outcome of MVD go down
Read "Striking Back" by Dr. Ken Casey if you haven't yet!
Thank you Kc Dancer Kc for your reply. I will do some research and look for Striking Back at my local library. :)
Hi Gin,
In addition to my Dilantin and Gabapentin, Lamictal has been added.
It has helped, I still have pain but I can still half-way function with the meds.
As for the "Striking Back" book, it is great. You will want to buy a copy just to have around for reference.
Reading that has explained so much to me.
Just finally got a copy about a month ago and I have had this TN since 2003.
Wish I had bought the "Striking Back" book years ago.
xxOxx
I had a glycerol rhizotomy done, and yes it was done under anesthesia. I had it performed by Dr. Lim at Johns Hopkins. It did get rid of my pain from the tn1 but not the atypical pain, but it did bring it down a notch so to speak.
I would do it again since it helped, but it didnt get me to the point that I could get off the meds and be pain free because of the atypical pain. Message me if you want more info
Wendy