Drs Levy and Krietemeyer make an important point that rehabilitation is an essential component of the care of individuals affected with NF1 and that such issues, often overlooked in the midst of complicated medical problems, deserve more attention.
Neurofibromas are benign growths that can result in significant morbidity depending on the extent and location of the nerves associated with them. One of the more morbid anatomical sites for neurofibroma involvement is the vertebral column. Neurofibromas associated with the spinal column have been reported in as few as 2% of individuals with NF1.1 In other series,2 as many as 14% to 19% of individuals with NF1 had spinal neurofibromas. Spinal root neurofibromas can compress the spinal cord or the spinal root on which they are growing and lead to neurological abnormalities. This may result in progressive paraparesis, severe radicular pain, sensory loss, gait disturbances, and bowel and bladder dysfunction.
Gutmann DH. Physiatry and Care of Patients With Neurofibromatosis-Reply. JAMA. 1997;278(18):1494. doi:10.1001/jama.1997.03550180044032