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Genetic and Rare Diseases Information Center (GARD)

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Other Names for this Disease
  • Congenital cutaneous neurilemmomatosis
  • Neurilemmomatosis congenital cutaneous
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How might schwannomatosis be treated?

There is currently no accepted medical treatment or drug for schwannomatosis, but surgical management can sometimes be effective. Medication treatment with gabapentin or pregabalin and use of short acting opioids and/or nonsteroidal anti-inflammatories for pain can be successful for many patients. Pain usually improves when tumors are removed completely, although the pain may recur should new tumors form. Finally, surgery may put patients at risk of further neurologic problems. Therefore, surgical removal of schwannomas in patients with schwannomatosis is generally a last resort and is highly individualized and dependent on the size, location and complexity of tumors. 
Last updated: 3/14/2014

  1. Yohay K, Bergner A.. Schwannomatosis. UpToDate. March 3, 2014; Accessed 3/14/2014.

Clinical Trials & Research for this Disease

  • The Research Portfolio Online Reporting Tool (RePORT) provides access to reports, data, and analyses of research activities at the National Institutes of Health (NIH), including information on NIH expenditures and the results of NIH-supported research. Although these projects may not conduct studies on humans, you may want to contact the investigators to learn more. To search for studies, click on the link and enter the disease name in the "Terms Search" box. Then click "Submit Query".