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Neurofibromatosis Type 1

Treatment

Mayo Clinic doctors trained in nervous system conditions (neurologists), doctors trained in hereditary conditions (geneticists), doctors trained in skin conditions (dermatologists), doctors trained in musculoskeletal conditions and surgery (orthopedic surgeons), doctors trained in nerve surgery (neurosurgeons), imaging specialists (radiologists) and doctors in several other areas collaborate to determine the most appropriate treatment for your condition.

At Mayo Clinic, your treatment team will provide you with individualized care, monitoring your symptoms and the severity of your condition. People who have neurofibromatosis type 1 may experience many different symptoms and complications. Although neurofibromatosis type 1 can't be cured, your treatment team will work closely with you to manage your condition and treat symptoms and complications.

Your treatment may include several options, depending on your condition.

  • Monitoring. Your doctor will perform a physical examination to check for any changes or complications in your skin conditions or tumors, your vision, your blood pressure and other changes in your body. Children may be monitored for any developmental changes or learning difficulties. If you experience any musculoskeletal complications, including curvature of the spine (scoliosis), your doctor often will refer you to an orthopedic surgeon for evaluation and treatment.
  • Surgery and other procedures. Depending on your complications, the location of your tumors, the severity of your pain and other factors, your doctor may recommend surgery. If tumors affect surrounding tissues or organs or are cancerous (malignant), your surgeon may remove the tumors. Your surgeon will discuss with you whether surgery is the most appropriate approach. Some tumors are difficult to remove and can cause serious complications, and sometimes tumors grow back. Your doctor may be able to remove smaller tumors using a scalpel or laser therapy.

    People who have cancerous tumors may have additional treatment, including radiation therapy or chemotherapy. Doctors will work closely with specialists in cancers of the nervous system (neuro-oncologists) to plan your cancer treatment.
  • Psychological and genetic concerns. Mental health specialists (psychologists) and genetic counselors will educate you and your family members about neurofibromatosis type 1 and help you and your family to cope. Genetic counselors can help you and your family to understand the genetics of the condition, and may recommend testing for your family or for pregnant women (prenatal genetic testing).
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