My husband is in the Air Force and we are stationed in the United Kingdom. Unfortunately for me, the military doctors are not very familiar with neurofibroma. After having my second surgery I was told that I would need to have a colonoscopy every 3 years. Other than that, there is nothing else that is being done.
Even though I have relatively few complaints, I do have a lot of bowel pain and can't wear anything tight around my stomach. I have to be careful of what and when I eat to try to keep the problems to the minimum. In the last year I have been getting numerous freckle size cafe au lait spots all over my body, and some of them are getting larger. Especially on my face. I know they are not just freckles, because I am hardly ever in the sun. I used to have a very nice complection, but now, daily, I notice more and more spots. I have not found any lumps anywhere on my body.
If there is anyone out there that has similar problems I would love to hear from you. It's really scarey just not knowing what will show up next. Since my biggest problems are internal, it worries me just not knowing what to expect. My husband loves me and says he doesn't notice much of a difference. But, he just doesn't understand the whole problem. Or maybe he does, but tries to keep my spirits up. Anyhow, thanks for listening. I would love to hear from anyone that would like to just talk.
Jane / added July 1999