I posted this in the general forum, but someone recommended I try putting it here, too!
Hello, my name is Cassie and I'm new here!
I'm in the process of talking to my doc about ATN, but wanted to see if anyone could relate to my symptoms and help me figure out what questions and procedures to ask about.
To start with, I had brain surgery when I was 23 in June of 2010 to remove an astrocytoma from my temporal lobe, which involved 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 removed a metal pin from my skull from the initial surgery, 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. 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 diagram shows the range and areas of my discomfort. The bolded lines are where I have the most burning, tingling, & aching and the circled area (trigeminal ganglion) is my worst spot. It burns and stings and aches alllllll the time.
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)
To me it seems pretty obvious, but 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