Ask:
neurofibromatosis 1
I have NF1 and it has affected my spinal cord.I have loads of tumors all over the spine and several inside the spinal cord.I also have a syrnix inside the spinal cord that is growing and goes all down entire spine. I do have a neurosurgren but he don't want to opperate on me till I can't walk.He wants to watch how fast the tumors grow then do surgrey.It is getting harder to walk and I was wondering just how long do you think it will take for the tumors to grow big enough to paralize me?I also was wondering since these type of tumors can turn to cancer and the only way to tell is with a biopsy how will I know if mine have turned.I have 6 people in my family with NF1 and all have had a tumor turn to cancer.I am just the only one who has spinal tumors
Answer:
neurofibromatosis 1
Thanks for your question. In NF1, surgical treatment of the tumors needs to be carefully thought out. Often the procedure carries a real risk of nerve dysfunction after the surgery. In the case of spinal cord and spinal nerves, this can result in significant problems. If the tumor is causing a significant neurologic deficit or pain, surgical removal needs to be considered. Also if malignant transformation (turning to cancer) is suspected, surgery is considered.
Usually we operate the clearly symptomatic tumors, with special attention paid to informing the patient of the potential risks of the operation. Any operation of a spinal cord tumor carries the risk of serious neurologic sequelae such as paraparesis (lower limb paralysis) or tetraparesis (four limb paralysis). Therefore surgical treatment should be considered when the tumors themselves are causing progressive deficits, and the potential benefits of surgery outweigh the risks. Your neurosurgeon is probably thinking along the same lines and that's why he is reluctant to operate just yet. Please talk to your neurosurgeon about your concerns and ask him to explain his strategy.