Sara's Neurofibromatosis

    
      Re: Sara's Neurofibromatosis
    


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Posted by CCF MD on September 17, 1997 at 10:27:08:

In Reply to: Sara's Neurofibromatosis posted by Ann on August 26, 1997 at 20:29:38:

: My daughter, 7, was diagnosed with NF at age 3 in 1994. She had
  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, and the location (just off the spine),
  the neurosurgeon was unable to remove any of it.
  I have been wondering ever since if there was any way other than surgery to
  remove it and the other 3 that have appeared nearby 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. She has an MRI once a year.
  I once asked the neurosurgeon if that vibrating knife could have been used
  to break up that tumor and he felt it could not be. There have been
  no other treatment recommendations. 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? Is that the Gamma
  Knife?
  Thanks very much for considering and answering my question.
==========================================================================
Let me first give you the NF I National number. This is a very good source
of potential information. 1800 323 7938. They can often give you names of centers
doing research on NF I or clinical trials ongoing.
At the Cleveland Clinic Dr. B Cohen (Ped. Neuro-oncology) is involved in a
study using Thalidomide for NFI and if you were interested in a consultation
you could call 216 444 5559 to schedule.
The gamma knife which has been operational at the clinic since January of 97
using radiation. There is a risk of radiating this lesion and causing a transformation
to a malignant sarcoma.
If you are interested in a second opinion regarding specific information
you should call the above number. This information is provided as reference
material only and you should consult your doctor before making medical decision.