FINALLY, after a long time with just pain meds, and no real answers, I am getting help as to the cause of my mouth pain. Long story short, I had my MVD in September of 2011. I woke up with severe chin pain. Within three months time that pain had spread to my mouth: right side, lower, palate, gums, teeth, half of tongue on right side, etc. Just the lower part. It hurts me 24/7 and is numb. It just never, ever stops. Sometimes, it gives me a much needed reprieve.
AFTER my neurosurgeon left the practice, I began to get answers. I emailed a neurosurgeon at his practice ( thanks to a girl on here!) and asked him if he could help me. He said he could, and also said if this was a nerve type pain, I could get a stimulator, and that there was SOMEONE AT THE CLINIC who did them! My old neurosurgeon could have told me that; but he was too busy telling me that he thought the anesthesiologist severed something in my mouth when I was intubated for the MVD. When I reminded them that I BEGAN this entire medical fiasco by seeing an oral surgeon, they told me my oral surgeon basically sucked, and that I had better go to theirs. I did. Yesterday. I am SO VERY thankful for this doctor I seen yesterday.
He said he wanted to do a test: If he shot me with novacaine and the pain did not go away or lessen, then this pain was just going to be with me for life. However, if he shot me with novacaine and the pain did retract or lessen, it meant that the nerve was still alive in some fashion. Three injections later, I had IMMEDIATE RELIEF. Now granted, I only felt ONE out of three injections, but I had relief. The doctor himself got excited. He said it showed promise- just a wee bit and not to get my hopes up, but it showed promise. He told me it is hard to tell if nerves are DYING or coming to LIFE, and had he seen me sooner he might be able to tell me. He recommended that maybe I have the nerve cut. He said "the downside of that is you may end up numb with pain, but you already are". He said if I dont go that route, to get the nerve frozen. But this doctor actually hugged me. I cried. He said right before I left, come here- I am going to do something for you. I am going to give you ONE more injection so that you are pain free for at LEAST 8 hours and can live a normal life today. To be honest, it was great. But also when the pain came back... devastating. He tried his best not to "knock" my neurosurgeon but said "while he went in to fix your trigeminal nerve, he messed up your inferior alveolar and lingual nerves... I mean I hate to call a doctor out as being a bad doctor, but ... in this case he was wrong by you."
But here is my other option: The neuro stimulator. I would have wires implanted under my skin attached to a battery pack ( either for life or until the nerve heals on its own.. which it may never). The neuro stimulator will have an up switch. The more my pain gets, the more I jolt the pain and it scrambles the signal to my brain; hence no more pain. The wires would be threaded subcutaneously under my face and neck and come out my shoulder, underpit or even buttock as they see fit and by my body type, etc. Considering I have a disabled child who WILL yank wires, I hate to say it- but they may put it in my butt. Ick. BUT I was told it would abolish this pain NOT cure it, but take it away. Bye. Gone. Cya!
AND, here is another option. Since the novacaine worked, the oral surgeon said nerve blocks to the mouth are a very real possibility for me now- and I can have those while the nerve repairs itself or say for two years, and then after that time if I still have pain- then it is time to make a move.
I had a stroke during my original MVD on the cerebullar peduncle- an attachment between the cerebellum and brain stem. Had I stroked ON the brain stem, I would be dead. They told me I was very very lucky. I do not want to have another MVD and die. I just don't; so I don't see that as much of an option but then I am reminded of a few things:
The original MRI I had showed the superior artery laying up against my T nerve. When they got in there, they found veins running up and down my T nerve in a vertical fashion and cut and cauterized them off ( which when doing so probably also cut and burned my T nerve, hence my pain). But what if the artery is an issue now? What IF there is something in there that can be fixed? What IF another neurosurgeon gets in there and says "wow, no wonder she has pain, he DID cut the nerve?"
But those are all ifs.
I have to head out to a reg dental appointment today for a cleaning ( doesnt bother me, I cant feel it) but I will check replies later. I just want to be out of pain.
I am not a candidate for grafting as he did not destroy the actual inferior or lingual nerve; but rather nixed it somehow at the branch part if that makes sense.