What are the Different Neurofibromatosis Treatments?

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  • Written By: Deborah Walker
  • Edited By: Lauren Fritsky
  • Last Modified Date: 12 September 2019
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Neurofibromatosis, a genetic condition usually diagnosed in childhood or early adulthood, causes tumors to form on the nerve tissue in the brain, nerves, and/or spinal cord. The most common type of neurofibromatosis is type 1, known as NF1; NF2 and Schwannomatosis are less common. Neurofibromatosis treatments most often focus on tracking the patient for the development of complications. Surgery, chemotherapy and radiation for malignant tumors and back braces are other forms of neurofibromatosis treatments; there are no drug treatments for this condition.

The signs of neurofibromatosis may be present at birth and are almost always visible by the child's 10th birthday. The signs of NF1 may include cafe-au-lait spots on the skin and tumors on the optic nerve and in the iris of the eye, abnormally large head circumference and abnormal skeletal development. In NF2, tumor growth on the eighth cranial nerve, early cataracts or other nervous system tumors are commonly seen. The main symptom in Schwannomatosis is a lack of tumor development on the eighth cranial nerve and pain.


Neurofibromatosis treatments usually focus on tracking the disease and monitoring the patient for possible complications. At a child's annual physical, the doctor will look for new neurofibromas and check old ones for any growth. Any abnormal skeletal changes may be noted, and the overall growth and development may be compared to the growth charts designed for children with NF1. Cognitive development and school progress, as well as a full eye exam, are also part of the neurofibromatosis treatment protocol. Depending on the severity of the condition, adults may need far fewer doctor visits to monitor their neurofibromatosis.

If a tumor is found to be pressing on tissues or organs, the doctor may recommend surgery to remove the tumor. Surgical neurofibromatosis treatments are not without risks, such as nerve damage or hearing loss. It is essential that the surgeon be experienced with neurosurgery and neurofibromatosis treatments.

For people with NF2 or those who have a vestibular schwannoma, stereotactic radiosurgery may be the best option for tumor removal. Stereotactic radiosurgery keeps hearing loss complications from surgery to a minimum. The main drawback of this type of surgery, especially in young children, is the possibility of radiation-induced cancer. The incidence of this cancer increases with each surgical procedure.

The majority of neurofibromatosis tumors are benign, or non-cancerous. Those tumors that do turn out to be malignant, or cancerous, are treated with standard cancer protocols. This might include chemotherapy and/or radiation therapy and surgical tumor removal.

Skeletal abnormalities are common complications of neurofibromatosis. Spine deformities may be corrected with a back brace, as in the case of scoliosis. If the abnormality is particularly severe, back surgery may be warranted. Drug treatments may be available for some complications of this condition, such as high blood pressure. At this time, there are no neurofibromatosis treatments that actually cure the disease itself.


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