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How to treat multiple neurofibromatosis?

Q: I was suffering from multiple neurofibromatosis with one in C6-7 with cord compression and another in C1-2. I have undergone surgery and neurofibromas that was in C6-7 has been removed. Please advise what I should do for the one in C1-2?

A:Multiple neurofibromatosis is a very difficult condition to treat as there are several neurofibromas on nerves within the spinal canal and elsewhere in the body. Your surgeon appears to be doing what is right - removing the neurofibroma that is causing your symptoms. If and when other neurofibromas (as for example that at C1-2 referred to by you) enlarge sufficiently to compress the spinal cord, they too must be removed. There is no preventive therapy I know of that can stop neurofibromas from growing.


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