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phantom power

(25,966 posts)
3. My wife spends some time on NF related groups and online resources
Tue Aug 14, 2012, 11:06 AM
Aug 2012

Her tumors were on her spinal cord (I think it's NF2-like, although it defied normal classification). On her 2nd operation, the surgeon removed two tumors the size of a grapefruit. There was spinal nerve damage from the surgery itself, and she'll live with that the rest of her life. Sometimes the pain is hard to witness. There's just nothing I can do to help her. But it's only intermittent. Her life is mostly normal. I'm extremely grateful for modern neuropathy drugs (and having health insurance that allows us to afford them). I'm not sure she'd choose to live with the pain if it was 24/7, and I don't want to ever find out.

I guess the "bright side" is that her tumors are internal, there's no cosmetic disfiguration involved like there is with some varieties.

I wish you and your son well. It's not an easy disease to live with, and medical progress on it is slow.

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