Greeneyes

368d

My neurofibromas is NF2
Where I get tumors on my nerves in my body, spine and brain. I’ve had several surgeries, and still have tumors but to small they say to do surgery. I am hurting always. I even have one on my right sacatic nerve. I can’t hardly walk, need a walker

Generalized pain

Chronic Generalized pain

Neurofibromatosis (NF)

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  • Leese

    304d

    I also have NF 2 I have tumors in my head and spinal cord and through out my body and understand all too well about the pain that comes with this. I have had a couple surgeries myself one to remove a 15 pound turmor off the left side of my head that was connected to my parts of my eye and chewing muscles they had to remove some of them as well as my tear duct they said I was lucky I could blink and because of it I have a severely hooded eye and the left side of my head is sunken in. I still have a peice of it on my brain because they said it would be to risky to take it out. I also have one sitting on the bottom of my spinal cord that is depleting the cushion and spinal cord liquid so from the bottom up to like the 6th vertabrra is bone on bone because they told me if they did surgery to remove it there would be a 95 percent chance I would be paralyzed so I told them I would just deal with the pain. I am in constant pain plus on top of everything else I also deal with chronic migraines and yes I no the difference between the two. I was born with the NF 2. When were you diagnosed

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