To explain my annual MRI’s & the Results:NF2 is caused by a lack of Merlin produced by the body to stop tumors from growing where they’re not wanted. Merlin is the body’s home-owner’s association, and without it, thugs come in and set up shop along the brain and spine.These tumors are benign, mostly harmless, and they’re only dangerous when they start to infringe on their neighbors rights, like those filthy gang bangers and their loud ass rap music bringing down property values around here.All people with NF2 get tumors in both ear canals, which is where the cranial nerves run and why NF2 is so dangerous to hearing, vision, facial movement, and balance. But other than that, NF2 affects everyone differently; this is why it’s so hard to treat. Doctors have no set pattern to study. Tumors pop up on the lining of the brain, by the brainstem, on the spine, just hanging out. They may sit there for YEARS not bothering anybody, then decide to strap a bomb in a backpack, and blow up the local 7/11, causing sometimes, irreparable damage to surrounding areas.So what happens is, we monitor tumors with annual MRIs, which are compared to previous MRIs to check growth. Scans are kept digitally or, at worst, on CDs.Technology is awesome.Then it becomes a game of, ok, this tumor has grown more than this one but this one’s closer to something important…So when an NF2 patient gets a MRI result of “stable”, "no change", or "come back in 6 months", that’s the very best we can get. But an NF2 life is that annual gut-wrenching MRI result waiting game. Right now, I am winning the game!
WHEN MY FATHER MARRIED MY MOTHER, SHE HAD 2 CHILDREN ALREADY, DAN & VICKI. MY MOTHER DIED WHEN I WAS 3. MY DAD WAS THEN A 50 YEAR OLD ALCOHOLIC. HE SOLD EVERYTHING AND DROVE TO CA, TAKING ME ALONG. HE LEFT DAN & VICKI. MY MOTHERS MOM ADOPTED THEM. OVER THE YEARS I ASKED ABOUT MY BRO & SIS MANY TIMES. THAT SUBJECT WAS TABOO, HE WOULD NOT TALK ABOUT IT. OR ABOUT MY MOTHER.
HE DIED WHEN I WAS 17 OF CIRRHOSIS. SO 19 YEARS AFTER SEEING MY SIBLINGS I GET A LETTER, FROM DAN SAYING "I THINK YOU ARE MY LONG LOST LITTLE SISTER. PLEASE CONTACT ME. BY THE WAY I AM DEAF." HE WAS IN VA BUT FLEW TO CA TO MEET ME. HE ALSO TOOK ME TO MY SISTERS HOUSE TO MEET HER & HER DAUGHTER,(MY NIECE - RHIANON, WHO IS NOW ON CREW) & THEN ON TO MY GRANDMOTHERS HOUSE. THEY ALL LIVED ABOUT 5 HRS FROM ME IN CA. I SPENT A SUMMER WITH DAN IN VA. I HAD NEVER SEEN A PICTURE OF MY MOTHER, HE GAVE ME MANY.IT WAS A VERY EMOTIONAL TIME. IN 1992, I HAD MRI'S & WAS DX'ED WITH NF2. I HAD ZERO SYMPTOMS UNTIL 1997. MY MOTHER DIED IN 1971, DAN & VICKI DIED IN 1995. ALL DIED DUE TO NF2 RELATED CRAP. MY MOTHER INHERITED NF2 FROM HER DAD.