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Neurofibromatosis Type 2 (NF2)

Neurofibromatosis type 2 (NF2) is a genetic disorder that causes noncancerous tumors to grow in the nervous system. There are two additional types of neurofibromatosis: the more common type 1 (NF1) and schwannomatosis, which is rare.

Symptoms of NF2 might include the following:

  • Hearing loss
  • Ringing in the ears (tinnitus)
  • Loss of balance
  • Vertigo
  • Vision loss
  • Arm or leg weakness
  • Seizures
  • Skin tumors

NF2: what you should know

  • The most common symptoms of NF2 — hearing loss and balance problems — are caused by a benign, slow-growing tumor called a vestibular schwannoma (also called acoustic neuroma). This tumor appears on the nerve that transmits sound and balance sensations from the inner ear to the brain.
  • NF2 symptoms can appear at any age, but they most frequently emerge in people between the ages of 18 and 22.
  • About half the people who have NF2 inherit the disorder from a parent. The other half of NF2 cases are caused by a spontaneous gene mutation.
  • There doesn’t appear to be a “typical” progression of NF2, although in inherited cases it often runs a similar course in members of the same family who have the disorder.

How can I get help for NF2?

Specialists in the Department of Otolaryngology, the Department of Neurological Sciences and the Department of Neurosurgery at Rush are experienced in diagnosing and treating NF2. To make a diagnosis, they look for the following:

  • Vestibular schwannomas in both ears or
  • A family history of NF2 plus a vestibular schwannoma in one ear before age 30 or
  • Any two of the following:
    • Glioma, a tumor that begins in the brain or spine
    • Meningioma, a tumor that starts in the membranes surrounding the brain or spine
    • Schwannoma, a tumor on the outside of a nerve sheath
    • Cataracts on the lens of one or both eyes (in children and young adults)

Tests for NF2 might include the following:

  • Hearing tests
  • Vision tests
  • Magnetic resonance imaging (MRI) to look for tumors
  • Genetic tests to find a change in the gene that causes NF2

Complications of NF2 might include the following:

  • Deafness
  • Severe balance problems
  • Facial nerve paralysis
  • Spinal cord compression
  • Swallowing difficulties (dysphagia)
  • Vision problems

Care for NF2 at Rush

Otolaryngologists, neurologists and neurosurgeons at Rush are experts at collaborating to treat NF2. Because NF2 is fairly rare and every case is different, your treatments will be tailored to meet your unique needs. Your plan may involve one or more of the following:

  • Regular medical appointments to monitor your symptoms
  • Surgery to remove vestibular schwannomas or other tumors that might arise. The timing and type of surgery used for NF2 varies widely according to each patient’s symptoms and how quickly they are progressing.
  • Radiation to shrink tumors.

Depending on your symptoms and/or complications, you may receive care from other specialists at Rush. Your doctors will work together to coordinate every aspect of your care so you have a seamless experience.

Why choose Rush for NF2 care

  • Rush's neurology and neurosurgery programs are consistently ranked among the best in the nation by U.S. News & World Report.
  • Because Rush is an academic medical center with a thriving research program, patients often have the opportunity to participate in clinical trials that evaluate innovative new treatments.

Departments and programs that treat this condition