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Anyone have Schwannomatosis? (Neurofibromatosis type 1 (NF1)

Spine Health | Last Active: May 13, 2023 | Replies (43)
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@tjp4

Hello, I was just reading your post and wish you well and a pain free life. I have had severe pain in my rectum on the upper left side for the past 8 years. I have had 4 colon doctors tell me different diagnosis. The last doctor telling me it's not levator ani but torn muscles behind nerves. The doctor said no one would perform surgery because it would leave me incontinent. Do you mind telling where your pain is? My level of pain is so bad and I'm taking dilata to help
Thx. Tom

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Replies to "Hello, I was just reading your post and wish you well and a pain free life...."
Lisa Lucier, Moderator | @lisalucier | Apr 11, 2019

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?

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schwannjohn | @schwannjohn | Apr 11, 2019

Tom- @tjp4 - the tumors i have are in the pudendal nerves in the ischiorectal fossa and sphincter, gemellus, and transverse perineal muscle tissues. The MRI shows the clarity of the reason for the pain. Personally i feel like my case would be one a Schwann doc might view as a research goldmine! I wish you well and i wish you a pain free life.
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