← Return to Anyone have Schwannomatosis? (Neurofibromatosis type 1 (NF1)

Discussion

Anyone have Schwannomatosis? (Neurofibromatosis type 1 (NF1)

Spine Health | Last Active: May 13, 2023 | Replies (43)
Comment receiving replies
@lisalucier

Hi, @tjp4 - thanks for your well wishes for @schwannjohn. It sounds like you've had to deal with pain for a very long time, and that must be extremely hard. Do you also have schwannomatosis, @tjp4?

Jump to this post

Replies to "Hi, @tjp4 - thanks for your well wishes for @schwannjohn. It sounds like you've had to..."
tjp4 | @tjp4 | Apr 11, 2019

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.

VIEW AND REPLY