Got diagnosed, which route would you chose?

General General TN & GPN (Old Site)
1

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.

2

Oh my, with all those possibilities, I wouldn't know WHICH way to go. I wish I could give you some advice. I would say to make a list of the pros and cons of each one and then make your decision from there. I wish you the best of luck! ((hugs))

3

I would ask RED directly--message him - he is on vacation - but will reply soon -- he knows about each and every choice you have !

4

I second KC. All the best.

5

I dont know what the last sentence means with OS. I originally had the MVD for trigeminal disturbance in my jaw, lower jaw pretty much spreading up and down the whole lower jaw; I have always said that. When I came out of surgery, the pain in my jaw was gone, but the chin pain was totally, totally new and then progressed into full blown mouth pain of which I have never, ever had. He told me that the 3rd branch of the T nerve going into my mouth, where it branches to the IAN was messed up. He also said something about the lingual nerve running in very close proximity to the T nerve and he had to have bumped it or whatnot, because he asked me are you SURE he ONLY operated on the T nerve? I think OS means Original surgery. I never really had 2nd branch involvement. It was always lower, very low.

I had a T nerve disturbance. I came out with a dental nerve injury from 3 branch of the T nerve.

6

Ditto to Jackie and KC. Red will help point you in the best possible direction for you.

PS
Tell your what if’er to shut up, I know that sounds off, but it can drive you crazy. Right now just think on all of your great possibilities!

7

Thank you Kari,

Cleo: No, my pain never started with dental trauma, but with a head injury. I did have pain in the cheek. Cheek/jaw for me can be the same thing. The pain went into the middle of my face but always originated from the bottom. It would start there, go up into my cheek. Heck at times it went to my head. I just had amazing headaches when it came on, but no it never started with anything dental related. I am in the lip and chin pain due to the MVD. I never ever had this mouth, lip, tongue and chin pain until the MVD. My cheek and jaw are just numb. Sometimes they feel REALLY numb and other times I swear they almost feel normal BUT the mouth never ever feels normal; ever. It got close after I had the hardware out ( the plate over my MVD hole broke a screw) and I had almost a darn near very normal two weeks.

The dentist said that when he messed with the T nerve he damaged my IAN and Lingual nerves. The neurosurgeon who I had of course tried to say that someone ELSE did it like the anesthesiologist who intubated me. The dentist ruled that out and said nope nope and nope- the MVD caused this pain; he hit something he shouldn't have; no ifs ands or butts about that.

He said I had a form of AD but not true AD. He said if it was true AD, he could have shot as much novacaine into my mouth as he wanted and the pain would not have stopped; so there is some attachment still there. I think there are two forms of AD, I think he said deafferentation or something. I was balling and crying just relived that there was hope for me. He said since the IAN and Lingual nerve were NOT injured directly at those nerves, but rather as a disturbance to the T nerve branch, that the stimulator is surely an option but he also said about getting the nerve frozen. I looked up that cryosurgery to the T nerve last night. It sounds promising butttt I just don't want that nerve messed with anymore. I think I will have the stimulator, or take that option. If this isnt true AD in the most painful form, I dont even want to KNOW what that feels like, so I will not have the nerve messed with anymore BUT I am considering a nerve block to the mouth. If that novacaine did the trick for me for almost a day, I wonder if the nerve blocks would help.

I read some posts a woman had posted on another board where she had the same problem as I. She had a few nerve blocks done, each three months apart for about a year. After a year, the pain just up and walked away and didn't return and she stopped posting. I tried emailing her but never got a response. Id really like to touch base with her.

I see the new neurosurgeon on the 2nd. I am really hoping he gives me a few options. I certainly will not pick one that day but think on it for a day or two.

Its really messed up that we go into this surgery to help one thing and in some unfortunate cases like I, something ( or someone) goes really wrong. In my case, the stroke, the foreign accent syndrome, the mouth pain is just becoming a bit too much for me not to be highly peed off about anymore. I have taken this in stride for a very long time- even though the pain has stolen my life. I dont really plan to be nice about this pain anymore. It was caused; I want it fixed.