Quick recap ( because this is going to be long) Had Atypical TN from 2004-2011. Had MVD in September of 2011, almost ten months ago. I suffered a cerbellar stroke extending to the brain stem during it. I had veins laying vertically over my trigeminal nerve, no artery compression. They cut and cauterized the vein bundle. My relationship with my regular neurosurgeon is severed for obvious reasons.
I had NO pain from the September 28th MVD until the last week in November when I said "my mouth hurt". Then, in December somewhere around christmas, my mouth REALLY started hurting and hasn't left since but has improved. At first, ( this is all on the lower right side) my teeth went numb, tip of my tongue, lips, chin, with pain and alot of burning.
However, since December, my teeth have woken up, the tip of my tongue has woken up, and although I still have decreased sensation in most parts of the right side of my mouth and cheek, I can feel it. Albeit one spot on my chin that is painful... thats so dead, I could stand in a mirror and drive a needle straight through it without flinching.
Behind my ear, however, is a bony- and very painful protrusion. This comes and goes! I just got done having one bump shrink and was able to lay on my right side again, only to have another come out. My incision has also opened up numerous times and was cultured just as early as two months ago. ( just dead skin cells were found thank goodness).
I am going CRAZY in this constant mouth pain. Somedays, it can be a 1 in pain and not really bother me much, other days a ten, but the fact is- IT IS ALWAYS THERE IN SOME SHAPE OR FORM. Now add to that that these bony protrusions hurt like **&ll.
Does anyone have any idea what these are? My pain specialist told me last month that I am having "one big atypical trigeminal attack" in my mouth. Um? Huh? This is NOT TN IN MY MOUTH! I went into surgery with TN and came out with something MUCH more painful.
I literally am at my witts end. I laid on my partners chest last night and just cried. The shocks aren't TN per se, my pain doctor said they are neuropathic shocks that show the nerves are trying to wake back up and work again. Well work already! He also said that since I am showing some improvement, this just can't be anesthesia dolorosa.
OK then what is it? Its not trigeminal neuralgia or one big attack. I am beginning to wonder, since I had the stroke DIRECTLY where he operated at, if a lesion from the stroke is causing a compression. In fact, my pain doctor said I still DO have a compression. Im so confused. All I know is I am in pain and no one seems to be able to piece this together. I need a new neuro in my area too, but no luck in finding one. I just feel out of options. Really on witts end here.
Anyone else have bumps behind their ears or know what this pain is?? First thing in the morning, my whole face is also swelled too. ( that just started)