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How does Schwannomatosis affect you?

This depends on how many schwannomas develop and where within the nervous system they develop. When the schwannomas are located on the nerves in the arms and legs, the main problem is usually pain. For some reason, the schwannomas in Schwannomatosis are often associated with more pain than the schwannomas in NF2. Most nerve tumours are acutely painful when touched (described as “shooting, burning, electric shock”) but in Schwannomatosis the pain can be more severe and persistent. Fortunately, there are drugs like pregabalin and gabapentin that can help with this.

If a schwannoma grows on a spinal nerve root and extends into the spinal canal, it can cause problems with weakness of an arm or leg or loss of sensation.

Management of Schwannomatosis

Effective pain management and control can be a challenge in Schwannomatosis. Referral to a specialist multidisciplinary pain clinic can be helpful and can offer support with medication and other techniques. Once a tumour becomes symptomatic causing pain, surgery to remove it can bring relief. This procedure will be performed by a skilled neurosurgeon or peripheral nerve tumour specialist.