I’ve been diagnosed with schwannomatosis. I have had a severe pain in my right arm. I’ve already had tumors removed, and have lost some of function in my hand. I’m going to have another operation in few months to remove more. What I want to know is, how many tumors does the average patient get and how prevalent is schwannomatosis? Recently pain in the left arm started. I don’t know how I am going to work with this condition. I am afraid that I will lose my job.
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I’ve heard that surgical management of schwannomatosis is often quite effective. The pain should be subsiding when the tumor is removed, but unfortunately it may recur in new tumors form. Management in a multidisciplinary pain clinic is advisable in cases when surgery is not efficient. There is no other currently accepted medical treatment or drug for schwannomatosis. Schwannomatosis is a genetic condition. It may often skip generations, therefore more distant family members with unexplained neurological symptoms and/or unexplained pain should be evaluated for the possibility that they are also affected.
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