Atlantis Orthopedics and I will be parting ways. I appreciate all of their support and collegiality over the years. Unfortunately, I will not be accepting any new patients under the auspices of AO after 12/25/22.



Neurofibromatosis is a genetic disorder (can be passed from parent to child). Neurofibromatosis (NF) affects development and growth of nerve cell (neural) tissues. It causes tumors to grow on nerves (neurofibromas) on or under the skin anywhere in the body. The tumors are usually not cancerous (benign), but in some cases they can be disfiguring. NF can also cause skin changes, bone deformities and other problems. It can also cause developmental abnormalities; patients with NF have a higher incidence of learning disabilities. Symptoms vary greatly. They generally get worse over time.  

  • Some people have symptoms that are mild or not noticeable at all.
  • In other cases, NF significantly disables people.  

Neurofibromatosis takes two different forms, type 1 (NF1) and type 2 (NF2). One abnormal gene causes each form.

Diagnosis. A doctor must physically examine a person to diagnose NF. Give the doctor your complete medical history. He or she will look for changes in skin appearance, tumors and/or bone abnormalities. The doctor may also need to physically examine close family members (i.e., parents, siblings and children) to look for signs of NF.

Risk Factors / Prevention

Some people inherit neurofibromatosis from a parent who has it. Other times a normal gene changes (mutates) into NF. (Mutant genes can pass on to succeeding generations.) NF affects equal numbers of males and females. There is no known cure for either type of neurofibromatosis.


NF1. NF1 is the more common form of Neurofibromatosis, occurring in 1 in 4,000 births. Also known as von Recklinghausen disease, NF1 is long lasting (chronic). It mostly affects nerves of the outer parts of the body (peripheral nervous system). Symptoms begin at birth or early in life. People with NF1 usually develop:  

  • Multiple birthmarks. Six or more light brown-colored birthmarks (cafe-au-lait macules) may be located anywhere on the body including the mouth and tongue. The spots usually appear before about 9 years of age. They take various shapes and measure about 5 mm or more across in young children and about 15 mm or more in adolescents. (Note: Birthmarks alone do not indicate NF; some people who do not have NF may have one to three cafe-au-lait spots.) Although they do not cause any medical problems, cafe-au-lait macules may increase in size and number with age, and become darker. Other skin abnormalities in NF1 include freckling in the armpit and groin areas (axillary and inguinal freckling).  
  • Multiple neurofibromas. A person with NF1 may have any number of neurofibromas - from none to hundreds. The tumors are usually small, painless and slow growing. They may form skin nodules or masses of tissue deep in the body. Two or more lumps may appear at any age, especially around adolescence. (Note: A single or few neurofibromas alone do not indicate NF; some people who do not have NF may have a neurofibroma.) Tumors caused by NF1 sometimes affect the brain and/or spinal cord. They may grow on eye nerves (optic glioma) and in rare instances interfere with vision. Sometimes a tumor (especially on the face, arm or leg) involves multiple nerves and grows to a very large size (plexiform neurofibroma). This type of tumor may become disfiguring, painful or life-threatening, and can cause weakness in the extremities.  
  • Lisch nodules in the eyes. Small brown tumors (Lisch nodules) often appear on the colored part of the eye (iris) in people with NF1. Lisch nodules cause no medical problems and may show up around ages 6 to 10.  
  • Other complications. Learning disabilities affect about half of people with NF1. A child may have delays in learning to walk or talk. Some people also have mental retardation and/or speech problems; short stature and oversized head (macrocephaly); skeletal abnormalities such as enlarged/deformed bones and curvature of the spine (scoliosis); hypertension and an increased risk of cancer (malignancy).  

NF2. NF2 is less common, occurring in 1 in 40,000 births. Also known as bilateral acoustic neurofibromatosis, NF2 mostly affects the central nervous system, causing tumors of the brain and spinal cord. Diagnosis may be difficult unless there is family history of the disease. Hearing loss that begins in the teens or early 20s is often the first symptom. People with NF2 usually develop:  

  • Auditory nerve tumors. Most people affected by NF2 have tumors of the nerves needed for hearing (auditory nerves) on both sides of the body. Although the tumors are usually benign, they often lead to progressive hearing loss as they grow.  
  • Other complications. Affected people may also have ringing in the ear(s), headaches, facial pain/numbness and trouble balancing.  

Treatment Options

Symptoms of NF vary. So the needs of the patient determine treatment. Doctors try to control symptoms and treat complications as they happen. Some general guidelines:  

  • Children with NF often need regular medical evaluations to measure growth and blood pressure, and examine skin, bones, the nervous system, vision and hearing.  
  • Adults with NF often need yearly evaluations of the nervous system and hearing.  
  • Some people with NF have ongoing medical issues such as pain and disability. They may need lifelong care from several medical and surgical specialists (i.e., orthopaedic surgeons, neurologists, dermatologists and radiologists). Some people with NF visit multidisciplinary neurofibromatosis clinics for comprehensive evaluations and management plans. They may receive treatment at the clinic or take a management plan back to their own doctor.  

Common medical care for NF includes screening for tumors of eye nerves, treatment of abnormal tissue growths and counseling.

Screening for tumors of eye nerves. Sometimes young children with abnormal skin spots do not yet have neurofibromas. If this is the case, regular eye exams and screening tools may help detect optic nerve gliomas for treatment before a child starts to lose his or her sight.

Treatment of abnormal tissue growths. Most tumors caused by NF need no treatment. But tumors that are painful, disfiguring, growing rapidly, impairing function or compressing other body parts may need treatment. A plexiform neurofibroma that grows fast may be at risk for becoming cancerous (malignant). Bone deformities may also need treatment. The doctor may use:  

  • Diagnostic imaging technologies: The doctor may use tools such as MRI (magnetic resonance imaging) to see into the body and find tumors when they are still small. Tumors of the eye and ear nerves may be easier to treat when discovered early. 
  • Biopsy: The doctor may check for cancer cells by removing a small part of a tumor.  
  • Surgery: The doctor may remove a tumor by cutting it out of the body. The doctor may also treat bone abnormalities with surgery. To treat severe scoliosis (curvature of the spine) caused by NF, a doctor may need to fuse and use internal instrumentation on part of the spine.  
  • Radiation. The doctor may use beams of energy (radiation) to kill tumors.  
  • Chemotherapy. The doctor may give you drugs (chemotherapy) to kill tumors.  

Counseling. Some people with NF and other genetic disorders become lonely and withdrawn because they feel different from others.  

  • They may have emotional and/or social pain concerning their appearance.  
  • They may fear complications, tumor growth or cancer.  
  • They may wonder whether to have children.  

Many parents of children diagnosed with NF also feel shock, anger, sadness, confusion, guilt and anxiety.

Family counseling and genetic counseling may help people with NF and their families. Counseling can provide support, answer questions and help you make plans for the future. People with NF may also want to attend support groups and stay informed about the latest medical research on neurofibromatosis.  

June 2004

All Information Copyright © American Academy of Orthopaedic Surgeons

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