Question Title: Neurofibromatosis

Forum: Neurology Forum
Topic: Neurofibromatosis

Posted by CCF MD on September 17, 1997 at 13:11:41:

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.

Question answered from 8/26.

The NF I foundation # is 1 800323 7938

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