There is no one treatment course that is right for everyone with schwannomatosis, and as of yet there are no medications known to be effective against the schwannomas of schwannomatosis. Management recommendations are based on the specific symptoms that a person develops. It is very important to see physicians that are experienced with schwannomatosis, such as at an NF Clinic.

Some people with schwannomatosis have no active symptoms and are only diagnosed because of the presence of multiple schwannomas. Management for these people can include annual neurologic evaluation and possible imaging as recommended by an experienced schwannomatosis medical care provider.

For people who experience pain related to schwannomatosis, treatment may include multidisciplinary management of pain. Surgery may be considered to reduce pain in certain circumstances where medication and other interventions have failed. However, surgery may not reduce pain and can in some cases lead to an increase in painful symptoms.

Surgery may also be considered for people experiencing neurologic or other organ system dysfunction. Any time surgery is being considered for a person with schwannomatosis, it is important that a neurosurgeon experienced in schwannomatosis care becomes involved to allow for the best possible outcome.