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Diseases

Genetic and Rare Diseases Information Center (GARD)

Schwannomatosis


Other Names for this Disease
  • Neurilemmomatosis congenital cutaneous
  • Congenital cutaneous neurilemmomatosis
  • Neurilemmomatosis
  • Neurofibromatosis type 3
  • NF3
Related Diseases
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Your Question

I have a segmental neuromatosis/schwannomatosis. The last 10 years the pain has been constant and gradually becoming worse. The last six moths have been dreadful. I would like to know what treatments work for others with the same condition. I have read some research work, but it is never anything like what I have got. I believe that surgery can be done? How successful is this? What medication works the best?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

How might schwannomatosis be treated?

Treatment for schwannomatosis is based on the signs and symptoms present in each person. For example, pain is one of the most common symptoms of the condition. Treatment with medications such as gabapentin or pregabalin and the use of short-acting opioids and/or nonsteroidal anti-inflammatories for pain can be successful for many patients. If pain cannot be managed with other means or if the schwannomas are causing other symptoms, they can be surgically removed. However this treatment is often used as a last resort because surgery may put patients at risk of further neurologic problems.[1]
Last updated: 7/26/2015

References
  • Kaleb Yohay, MD; Amanda Bergner, MS, CGC. Schwannomatosis. UpToDate. January 2015; Accessed 7/26/2015.
Other Names for this Disease
  • Neurilemmomatosis congenital cutaneous
  • Congenital cutaneous neurilemmomatosis
  • Neurilemmomatosis
  • Neurofibromatosis type 3
  • NF3
Related Diseases
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.