I'm trying to figure out if I should be asking my Dr. about Atypical Trigeminal Neuralgia and I was hoping to get some insight into whether I may be experience something similar to someone already diagnosed.
I had surgery in June of 2010 to remove an Astrocytoma from my temporal lobe which involved some extensive scalp cutting... basically like a question mark on the side of my head.
Since my surgery, I've had terrible burning highlighted in the photo I attached. It's on the side of my head near the front side of my ear. This burning is often coupled with aching and cramping in my temporal muscle. I've also noticed lately some slight burning on the inside top of my jaw.
I guess what I'm trying to figure out is if my symptoms are similar to anyone's with atypical trigeminal neuralgia.
I have burning sensations that can last hours or days that don't seem to have any cause. I have been prescribed tegretol and gabapentin with no results. Does this sound familiar to any of you?
My neurosurgeon thinks it's scar tissue buildup around the metal pins in my skull and he wants to do surgery to take them out along with the possible excess scar tissue. It hurts so bad that I am tempted to have the surgery, but I want to explore my options.
I have TN1, so I'm not personally familiar with atypical TN symptoms. I do have advice though --if I were you I'd get a second opinion from another surgeon. If this person damaged your TN nerve with the first surgery, you may want someone else to confirm that another surgery would be beneficial.
Hopefully someone in the community here will comment on the types of medications they use for ATN pain.
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