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Hello,

I was diagnosed with neurofibromatosis when I was a child, and so far I had three surgeries to remove the tumors, but for the last few months I’ve been experiencing very strong tailbone pain. Of course, my first thought was that neurofibroma developed on my tailbone, but all the tests I had, including the CAT scan, showed the pain isn’t caused by newly developed neurofibroma.

I’m waiting for my next doctor’s appointment, but in the meantime I’m researching what might be the other cause of constant, strong tailbone pain.

Any help is much appreciated

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Hi. NF can cause your bones to bow. But the tailbone pain could be unrelated. I have NF 1 and my joints are all extended in other words I am "double jointed"
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I have mild case of genetic mutation NF 1 and noticed pain in my tailbone too, just in May, Im 41 now, but Im considering going to the clinic at U of M (haven't been there since I was 22) but this pain is just when I sit, thank god I have a stand up job in surgery. I have 2 brothers that are chiropractors and they can't find any problems with my joints or bones....weird!
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