Hello, I'm new to this site. Seventeen years ago my pain hit while on my honeymoon in Ireland. I really thought perhaps it was dental, and my new contact lenses just did not seem to be working. My dentist ruled out a dental issue. The pain was so severe I ended up in the ER. The attending MD ordered an MRI. I was diagnosed with a benign meningioma near my optic nerve. I became a patient at Columbia Pres in NYC and underwent the removal of the tumor. Half my forehead was removed, my brain was collapsed by removing CNS fluid from my brain via my spine. I was told the pain would end and I was home in 5 days. The pain was incrediable, No sleep, no work, it was a dark time. I begged my husband for a divorce so he could go on and have a normal life. I really wanted many times to die. The neurosurgeon did not know why. I have lived in pain since. I gave birth twice with no pain meds because it did not hurt that bad compared to my head and face. I've had the following diagnoses....Migrane, Cluster Headaches, SUNCT, CPH. I've done oxygen therapy, anticonvulsents, and pain meds. I have had the pain that wakes me, the pain that comes when I'm happy, sad.. I've had epsisodes destroy vacations, holidays and events important to my sons. When I'm feeling good I try to shove lots of things into that time like shopping, cleaning and quality time with my family. I try not to plan things like people over for dinner because chances are I may end up in a far corner of my home sobbing. I have manage to work. I'm a director of a daycare and I have the very best staff.
My 7th neurologist viewed an MRI with a radiologist and it was suspect if my tumor was regrowing. I went back to Columbia and saw my neurologist because he is one of the finest people I know. I love him and trust him with my life. There are few that are like him. He said there is no tumor regrowth. We talked alot about the pain all these years. He talked alot about how neurosurgery has advanced since my tumor and refered my to another neurosurgon in the dept. Long story short, an MRI with done with "a trigeminal protocol" show my nerve being slammed. I sobbed alot!!! 17 years to get to this point.
I underwent Gamma Knife on Feb 1st. After 11 weeks I was no better. I was hopeful to maybe feel better 6-8 weeks and since my insurance was billed about $90,000. NY told my husband that the director of the GM program must have mispoke and it is up to a 6-8 month wait. AAARRRRGGGG.
People do not get this disorder. It is NOT a headache. I could live with that. These are attacks. I explain it as imagine...your teeth are being extracted, your eye is being removed, you are being scalped, there is a bear chewing the side of your head and face and a car has just backed over your head all at the same time....for hours at a time.
My husband is great. He manages all my appointments, goes on them with me, navigates the insurance companies and manages our boys (14 and 15) and the house. I would have died without them.
I know this entry is long so if you have gotten this far I thank you. I have never had any contact with anyone who may understand this. Anyone have GM that has helped?
Each day as each day comes! Thanks, Anne