neurofibroma removal and resulting paralysis

[czer513]

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!
Shari

[Lama Chahine, MD]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

Without the ability to examine you and obtain a history, I can not tell you specifically what the expected recovery for your leg weakness will be. However I will try to provide you with some useful information.

The femoral nerve is the nerve that predominately allows us to flex the thigh at the hip, and extend the knee. In general, with nerve transpositions, either one nerve can be connected to another, or a nerve is connected to a set of muscles, in hopes that it will sprout and start innervating those muscles. I am not sure exactly which type of surgery you underwent is, but basically, with  nerve transposition, the hope is that that the healthy nerve will sprout to the severed nerve. This is a slow process; if nerve connections are going to form, or if a nerve is going to regenerate, this occurs at a rate of 1 mm a day (0.04 inches a day). If this occurs, then, with time, the muscles will start to move. Months are needed to know if this reinnervation has occurred. After several months of surgery, an EMG/NCS test can be done to assess how the nerves are conducting and if the muscles are responding.

Physical therapy can be helpful in cases such as yours, in order to allow for some muscles to take over the function of the muscles that are weak. In order to understand better if physical therapy will help you at this particular stage, evaluation by a physical medicine and rehab specialist (PM&R) specialist may be of benefit to you. If new nerve connections are thought to have occurred several months down the line, then physical therapy will definitely be indicated to strengthen the muscles that would have not moved for some time. Some reversal of atrophy will occur if the nerves connect properly and with physical therapy.

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.