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neurofibroma removal and resulting paralysis

by czer513, Sep 26, 2009 10:18AM
I am a 39 year old woman who had symptoms for about three and a half years prior to diagnosis. I had left leg weakness, numbness and no knee jerk reaction. Doctors finally discovered, about three months ago, a large tumor on my femoral nerve. About two weeks ago, I underwent surgery to try and remove the tumor. They found that the tumor was a neurofibroma and it was not possible to separate the tumor from the nerve. The doctors had to remove about 7 inches of the femoral nerve in my left leg to get all the tumor. They then connected the obturator nerve to the femoral nerve going into my leg to hopefully regain some use in 12-18 months.
I can't find any information on such an issue. My doctor at Northwestern said they have only seen femoral nerve tumors in two other patients. I was not told whether they had to have the nerve rerouted or if they were successful in scraping the tumor off the nerve but was told they had successful outcomes.
I am hoping to get information from anyone who may have encountered this type of problem and can tell me more about  the probably of walking with a leg brace and walker again. Also curious about whether PT/OT is helpful in recovery form the onset. My doctor feels it will not make a difference. He says it will just take 12-18 for the nerve to grow over the transplant and then we will see how the function is.
One last thing, in the two weeks from the surgery, my muscle has dramatically atrophied. Will it eventually level out or should I be eating more protein or something to help. What is the best outcome to hope for and what can I do to make it happen?

Thank you all!
Shari
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