My name is Jan and I just read Dana's story. I am also 36 years old, I found out almost 3 years ago that I have Neurofibromatosis. I went in the hospital for a hysterotomy and that's when the doctor found a schwannoma tumor. I also ended up with nerve damage, I'm now drop footed.
After I statrted feeling better I had MRI's done and they found many more tumors. I have them in my brain, on my spinal cord and in my pelvic area. I have felt pretty good for the last couple of years but it is very scary because you don't know what your future holds. Also, if you have children the worry that comes with hoping and praying that they do not have this disease.
Dana if you read this please write me back, we could have alot in common. My e-mail address is under my husbands name BeeLee2. I would also like to hear from others.
Thanks
Jan / added March 1999