Sorry to here about you troubles. I have NF1 as well and I'm heavely medicated as well. After seeing my last girlfriend have a nervous break down from the spasms to severe chest pain to the not being able to walk normal and so much more. I've decided to spend the rest of my life single and take care of my family. My mom and both sisters hit hard and both nieces. Ones going blind and the other is always sick from it. Your lucky they remove yours. Once I hit 30 they started to skyrocket. I've heard about shark cartilage that you can buy at GNC or any health store. Sharks can't get any form of cancer or tumors because of it. Since I've been taking it they've seemed to slow down. I've also tattooed over half my body to try and poison the skin. The seem to not grow in the areas. Well thats enough for now. I wish you well. P.S I've joined a study clinic here in PGH. Starting soon I'll be a human guine pig for the dieses. Hopefully I can donate some info to help further generations. Good Luck and if you ever need anything just ask.