Neurofibromatosis

[KParsley2136]

Hello--
I'm new on here and don't really know what to exactly talk about besides something that has been on my mind. I have Neurofibromatosis but not too sure which kind. I also with the NF have scoliosis. I had a tumor removed from my neck because it was due to my NF. It wasn't cancerous as they would tell you. But it was getting bigger, and since I was little it had started to really bother me. So when I was 17 I had it removed. This is after I had already had 5 back surgeries to correct my 100 degrees both ways. I was a month away from being paralyzed. I have the cafe spots and with my feet I have Pes cavus. I am constantly in pain, with my neck. After the surgery I am always itching my neck because it just feels like weird and hurts badly. My foot is always in pain, and only recently has my back started hurting me. I feel that I need to know more about NF from my doctors or at least what kind I have. Both my parents have it but I am the ONLY one in my entire family that has scoliosis. The others in my whole family on both sides of my family, has just minor issues. I have been having very odd chest pains, where I feel I cannot breath and my lungs and heart are hurting, my hands hurt daily, my knees are somewhat in pain on a daily basis. I know this may sound like a long list of pains and complaints but this feels like someplace that I can just talk.
I know I need to go to the doctor and find out more but I think others may be going through the same thing.
My mother has the bumps on her skin all over her body. Not just the spots but the raised bumps. I do not have those, well as of yet. I am not too sure when they came for her or how long she has had them. I have had massive headaches as of late. And was told by my doctor that I should get my vision checked...has anyone else had any issues with their vision?
Please if you can help me with anything this will help me soooo much!!!!

Thanks!
Kristin