I have recently been diagnosed with schwannomatosis and I am interested in talking to other people with experience of this condition. I am in England and so far I have found the condition is not well known. Fortunately we have two expert centres here, one in Manchester and the other at Guy's Hospital in London. I have an appointment at Guy's in 2 weeks, to meet Dr Ros Ferner. I am scheduled to have surgery to remove a sciatic schwannoma at the Royal National Orthopaedic Hospital at Stanmore. I am interested in talking to anyone else with this condition, especially their experience of monitoring of their condition and prognosis.