Haven't been on in a while. So frustrated. Neurosurgeon says MVD not an option for me, tried another med that did absolutely nothing, I guess that's better than terrible side effects. Haven't had any treatment for the facial pain since. Had knee surgery last Monday and was given percocet for the pain. That is actually helping the facial pain, although I'm having mild pain right now. Debating contacting neurologist to ask what next. I need better options than this. :(
Wow, I didn't know that narcotics did anything for the pain except MAYBE take the edge off enough for you to sleep. I know they didn't even TOUCH mine. Nothing but anticonvulsants help mine.
Hi Kathy, hope you’re recovering well from your knee surgery!?
Have you had any other consults with other neurosurgeons??
Definitely see more than one! If they all say the same, then ask them what “they” think the next step should be?!
There is always HOPE! Call your Neuro !
((Hugs)) Mimi
I'm recovering from the knee surgery, had a very good follow up appt today. I'm stuck on the neurosurgeon front because of my HMO. He wanted me to see another neurosurgeon that used to be his partner and specializes in pain management. He wanted me to have a glycerol injection. Problem is that the neurosurgeon he wanted me to see is no longer participating with my HMO. I saw a pain management doc in the HMO and he doesn't do the trigeminal injections and no one within Kaiser does. He doesn't do them because of the risks outweighing the benefits (high recurrence rate, high risk of permanent numbness, among others). I've tried so many medications (either didn't work at all or had horrible side effects). There has to be something out there that hasn't been thought of. I contacted the neuro and he keeps suggesting meds that have already been tried.
As for the Percocet, it didn't help in the past (only took the edge off) but at 2 tablets I noticed that for the first time in months I was actually pain free. Now that I'm taking less and less I am having absolutely no benefit. I've had bad side effects from the anticonvulsants (tried neurontin, lyrica, tegretol, tripleptal, etc).
I feel so lost and don't know where else to turn. There has to be something out there that I haven't tried. The fact this has gone bilateral is very frustrating (still far worse on the left and I'm due to go back for more dental work on the left).