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Anyone have Schwannomatosis? (Neurofibromatosis type 1 (NF1)

Spine Health | Last Active: May 13, 2023 | Replies (43)
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@adronmoore

I have 25 or more tumors that I've found so far but brain mri was negative for acoustic neuroma. I had a very painful tumor excised from my pelvis. It came back as a schwannoma. Post surgery some of the other tumors started hurting and I have extreme numbness in left arm. Do I have NF-1 ?

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Replies to "I have 25 or more tumors that I've found so far but brain mri was negative..."
joyajoe | @joyajoe | May 12, 2023

More likely NF2, sounds likely. Please go to INSPIRE, ITS FOR THE NEUROFIBROMITOSIS DISEASES. It will help you figure out if you have it. I take Large doses of gabapentin, on fentanyl patches for years and oxycontin to deal with the pain. I stopped having the tumors removed after being disabled. Everyone is as nice as they are here. Good luck

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