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Tue, Feb 12 5:37pm · Schwannomatosis (NF) in Spine Health

Hi @nfrunner! Can you share with me who you see at Mayo for your schwannomatosis? I was diagnosed with schwannomatosis in 2011 and am a patient at a prominent medical center with a well-known NF Clinic. However, my pain is just terrible so I want to have a consult at Mayo. When I contacted Mayo, they set me up for an appointment with a neurologist who is not part of its NF department. I had to cancel the appointment because I suffered a spontaneous pneumothorax (collapsed lung) and could not travel. I am ok to travel now so want to reschedule but I think I need to be seen by an NF specialist, no? Or should I just be seen by the neurologist assigned to me? Would appreciate any guidance! Thanks so much.