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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 "I am diagnosed by NF1 since i was a child but doctors didn't knew that so..."
Welcome, @maryluise2. I'm glad to read that the pilocytic astrocytoma tumor was non-cancerous. However, since it was not completely removed, I can see that you are very concerned that tumors may develop in the future because you have neurofibromatosis 1 (NF1). This genetic disorder that causes tumors to form on nerve tissue.
I moved your message to this existing discussion:
- Anyone have Schwannomatosis? (Neurofibromatosis type 1 (NF1) https://connect.mayoclinic.org/discussion/schwannomatosis-nf/
I did this so you can connect with others members like @nfrunner @painwarrior @jontan @lmp1 @joyajoe @pkindron @keikowacko @schwannjohn @kathp, who also have experience with neurofibromatosis.
Mary Luise, what does your medical team say about the risk of new tumors developing for you? How often do you get MRIs now?