Neurofibromatosis can't be cured, but doctors will monitor you for complications and treat your symptoms. A team of doctors trained in many areas in a neurofibromatosis clinic often may be involved in your care.
Your or your child should begin appropriate treatment as early as possible. Generally, the sooner you or your child is under the care of a doctor trained in treating neurofibromatosis, the better the outcome.
If you have a child with neurofibromatosis 1 (NF1), your doctor is likely to recommend yearly age-appropriate checkups to:
- Assess your child's skin for new neurofibromas or changes in existing ones
- Check your child's blood pressure for signs of high blood pressure
- Evaluate your child's growth and development — including height, weight and head circumference — according to growth charts available for children with NF1
- Check for signs of early puberty
- Evaluate your child for any skeletal changes and abnormalities
- Assess your child's learning development and progress in school
- Obtain a complete eye examination of your child's eyes
If you notice any changes in signs or symptoms between visits, such as rapid growth of a neurofibroma or onset of pain in a tumor, it's important to contact your doctor promptly to rule out the possibility of a cancerous tumor and to access appropriate treatment at an early stage.
Once a child with NF1 reaches adulthood, the frequency of monitoring can be adjusted to suit the needs of the person with NF1. Adults with mild disease may not need monitoring as often as someone with more-severe complications.
If you have schwannomatosis, you may be given medications to help control your pain.
Surgery and other procedures
Surgery. You may have surgery to remove all or part of tumors that are compressing nearby tissues or damaging organs. Surgery may help relieve symptoms of all forms of neurofibromatosis.
Complete removal of schwannomas in people with schwannomatosis can ease pain substantially.
If you have neurofibromatosis 2 (NF2) and have experienced hearing loss, brainstem compression or tumor growth, your doctor may recommend surgery to remove vestibular schwannomas. Surgery may help improve your hearing. However, surgery carries risks, including hearing loss or damage to the facial nerves.
Discuss the pros and cons of surgery carefully with a doctor or surgeon experienced in treating nerve tumors. For example, tumors often grow back, and surgery may not be recommended again.
- Stereotactic radiosurgery. If you have NF2, your doctor may recommend stereotactic radiosurgery to remove vestibular schwannomas. This procedure allows your doctor to deliver radiation very precisely to the location of the tumor, and it can help preserve your hearing to an extent. However, it may create a concern of radiation-induced cancer, especially if the radiation is applied repetitively and at a young age.
- Auditory brainstem implants and cochlear implants. If you have NF2 and hearing loss, you may be eligible for auditory brainstem implants or cochlear implants to help improve your hearing.
Malignant tumors and other cancers associated with neurofibromatosis are treated with standard cancer therapies, such as surgery, chemotherapy and radiation therapy. However, early recognition of malignant tumors and early treatment are the most important factors resulting in good outcome.
Jan. 03, 2013
- Neurofibromatosis fact sheet. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/neurofibromatosis/detail_neurofibromatosis.htm. Accessed Oct. 12, 2012.
- Torpy JM, et al. Neurofibromatosis. Journal of the American Medical Association. 2009;302:2170.
- Plon SE. Neurofibromatosis type 1 (von Recklinghausen's disease). http://www.uptodate.com/index. Accessed Oct. 12, 2012.
- Evans DG. Neurofibromatosis type 2. http://www.uptodate.com/index. Accessed Oct. 12, 2012.
- Dashe JF, et al. Overview of schwannomatosis. http://www.uptodate.com/index. Accessed Oct. 12, 2012.
- Schwannomatosis. Neurofibromatosis Network. http://www.nfnetwork.org/understanding-nf/what-is-nf/schwannomatosis. Accessed Oct. 16, 2012.
- Ferner RE. The neurofibromatoses. Practical Neurology. 2010;10:82.
- Find a local chapter. Children's Tumor Foundation. http://www.ctf.org/Chapter-Resources/Find-a-Local-Chapter-or-Affiliate.html. Accessed Oct. 19, 2012.
- Local groups. Neurofibromatosis Network. http://www.nfnetwork.org/nf-community-near-you/local-groups. Accessed Oct. 19, 2012.
- Babovic-Vuksanovic D (expert opinion). Mayo Clinic, Rochester, Minn. Nov. 26, 2012.
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