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DiscussionAnyone have Schwannomatosis? (Neurofibromatosis type 1 (NF1)
Spine Health | Last Active: May 13, 2023 | Replies (43)Comment receiving replies
Replies to "Hi, @tjp4 - thanks for your well wishes for @schwannjohn. It sounds like you've had to..."
Hi lisa, I do not have tumors but the earlier post included pudendal nerve tumors in the ischiorectal fossa area which caught my attention. I wanted to know more for my issues. After visiting 5 colon and rectal surgeons with different conclusions imseeking answers. 2 doctors have mentioned to see a pain doctor and take meds forever. Dr. Kelly Scott with UTSW in Dallas told me I had bursitus and torn ligament in an area no doctor would try to fix. Scott heads up the pelvic floor. So frustrating.