Hello!
My name is Cassie.
I was referred here by another support board in an effort to get some help and information.
To start with, I had brain surgery in June of 2010 to remove an astrocytoma from my temporal lobe, which involves a question mark like incision on the side of my head that runs parallel to the temporalis muscle and parallel to my ear.
5 months post op, I started having this terrible pain, which I had attributed to the fact that I was still healing and it was the wintertime, but the pain has remained. Last month, my surgeon just removed a metal pin from my skull was there post op, and this hardware removal didn't help at all.
My pain is a constant aching, burning, stinging, tingling that feels like it's inside my head...essentially where the trigeminal ganglion is on a diagram. Sometimes, I get sharp, cramping pains like brain freeze but along the side of my head. I also have pains in my cheek, sinuses, and jaw, which can either be sharp and sudden or tingling and lingering.
Also, yawning seems to be very painful on the side of my head!
This pain seems to last 10-14 hours EVERYDAY. I have been on Gabapentin, Amitriptyline, Tegretol, Tylenol 3, Vicodin, Tramadol, and I've even had nerve blocks injected into my scalp.
Currently, I'm at a 5 on the pain scale (which is where I am most days)
Neither my neurologist or my neurosurgeon seem to have an idea of what's going on, but there is a neurologist at my clinic that specializes in atypical facial pains and neuralgias. I'm just trying to gather enough information to send to my regular doc to get a referral.
Can anyone with ATN relate to my description of pain?
Thank you for your help!!!! :D