Re: Neurofibromatosis

Posted By Ann Larkins on August 25, 1997 at 22:56:50:

In Reply to: Neurofibromatosis  posted by Ann Larkins on August 23, 1997 at 23:00:09:







: My daughter, 7, was diagnosed with NF at age 3. At 4 she
underwent surgery to biopsy (& hopefully remove) a tumor which
was pressing on her right femoral & right sciatic nerve. The tumor
was benign, but due to its involvement in and around the nerve, the
neurosurgeon was unable to remove any of it. I have been wondering
ever since if there was any way other than conventional surgery to
remove it and the other 3 that have cropped up near it in subsequent
MRI's. Her right upper leg is fairly thin, her muscles are weak there,
but she gets around incredibly well. She is as active as possible
and I marvel at her otherwise good health. I had asked the neurosurgeon
if that vibrating knife could have been used to break up that tumor and
he felt it could not be. I have taken her to annual MRI's since the surgery
in 1994 at Scottish Rite Children's Hospital in Atlanta. There have been
no other treatment recommendations. I have utmost confidence in my
neurosurgeon so have not taken her to another specialist. In your opinion,
is a visit to another surgeon recommended? Would there be a way for me to
choose one who has had positive results with that instrument in these cases?
Thanks very much for considering and answering my question.