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Learning about having NF part 2

I didn't think about NF at all, even though I still had NF headaches, lower abdominal pains that may or may not be NF,  etc. I Graduated from college in '05, got engaged, lived in China for a year, abdominal pains still bad, blah blah blah

Came home from China, moved to SC with my fiance.  I hadn't had my eyes checked in years, so I went to the Wal Mart optometrist to get my eyes examined. The doctor was a bit freaked out abotu waht she saw during the examination and recommended I see a neurologist. I didn't have health insurance, and told her I knew I had a tumor on my brain,but I'd see one as soon as I got insurance. Oh and by the way- my abdominal pains were still pretty bad. Life went on in good ol South Carolina.


That was November 2007- getting insurance didn't happen til August (same year) when we  got married and moved to Boston. My husband found a neurologist at Mass Gen that SPECIALIZED in NF- how lucky! Got an appointment for December.  And that's when I finally learned everything:

My facial tumor(s) were NOT under my eye, under my jaw, under my ear etc. It was ONE single tumor mass that wrapped around my entire facial cavity, and even slightly around my neck (which explains my neck incident from when I was 14). It is a mass with about 20 or so spider like legs. I thought the tumor part under my eye affected my vision, no, it was the one on my  brain (though that that's a duh but I wasn't a med major). My facial tumor wraps around my sinuses, my upper nasal area, my temple, my jaw, neck, etc. One mass. And my brain tumor? Try brain TUMORS. One is an optical glioma that puts pressure on my nerve. One is Optic atrophy- that is EATING my optic nerve.

I get MRIs every 2 years now to monitor the optic atrophy- but the last few I had, there have been no difference. I see a neuroopthamologist for the optic tumors and get tests to make sure nothing in my vision has changed- need to make another apt with him, but this year has been so crazy...I am also partly afraid of these appointments because he has to dig around near my eyes and well, I have severe, inovluntary spasms when anybody goes near my eyes.

Last year I was told I lost a chunk of field of vision and this year's appt would confirm or deny it- it could have been the way the test was done or it could have been something else- I know I need to see him but I can't make appts with him 1 year in advance like my neurologist, and being in school/work has kept me busy. Tried calling last week and got no answer- will try again this week.

Anyway, I  also learned my bump on my toe is a tumor (I had since named him Bob) and many other 'Bobs' grew since- I'll explain in another blog where they are.

I also learned NF is the reason why I AM SO DAMN SHORT- just under 5 foot tall. It sucks.

I don't have hearing issues, though I do have tinnitis. I don't have scoliosis. 

Since I've been in grad school (started in September this year) I've noticed I'm slow at a lot of things (well I felt that way in high school and college but ignored it) and soon I will be tested for NF related learning disabilities. HS was not easy for me, and I did REALLY REALLY well in college- I think it's  because my learning environment was better- I fucking hated the school system I went through before college (minus a few teachers I loved and still love).

My abdominal pains have also NOT gone away. In 2009 I had a few tests to figure out why, no answer, but they DID find cancer in my upper stomach area- that was taken care of with surgery, which is a whole other story, but my pains have been progressively worse since June. Had several MRIs, a PET scan, etc- long story short (because it IS a long story, I'll post my Youtube video ranting about it next) I have a tumor in my retroperitoneum (which explains all the lower left ab pains!) and a couple in my right abdominal wall.  Hoping I can get the retroperitoneum one removed- process will be complicated.


Now there's so much info online, but when I was a teenager, I knew nothing! Anyway, that's my story of how I found out, and how I'm still learning about its affects now.

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