Schwannomatosis is one form of a genetic disorder called Neurofibromatosis (NF) that has only recently been recognized. It is a rare disorder, affecting only around 1:40,000 individuals.
The Schwannomas develop on cranial, spinal and peripheral nerves.
Chronic pain, and sometimes numbness, tingling and weakness.
About 1/3 of patients have segmental Schwannomatosis, which means that the Schwannomas are limited to a single part of the body, such as an arm, a leg or the spine.
Unlike the other forms of NF, the Schwannomas do not develop on vestibular nerves, and as a result, no loss of hearing is associated with Schwannomatosis.
Patients with Schwannomatosis do not have learning disabilities related to the disease.
Cause
Though known to be a genetic disorder, the gene for it has yet to be identified.
Schwannomatosis can skip generations.
Treatment
If feasible, the Schwannomas can be surgically removed. Any tumor-associated pain usually subsides after tumor removal.
Sometimes, a tumor will reappear at the same site after surgery.
If surgery is unfeasible, then pain management will have to be used.
Other than surgery and/or pain management, there are no other medical treatments available. There are no drugs available to treat Schwannomatosis.
It is important to note that Schwannomas are always benign, and never degenerate into cancer.
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