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Heather Mills - Amputee Forum
Jaq

Phantom Pain

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Anyone have neurofibromatosis and have an amuputation? Did you have phantom pain? I am considering amputation but have been told that, due to the NF, I might still have the same amount of pain as now :( ..... Just wondering.

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I have the same thing you do. I lost my leg when I was 3. I don't remeber having two legs. My folks told me after surgery I complained that my foot hurt but I no longer have phantom pain, nor do I rember ever having suffered phantom pain. Rember this all happened over 30 years ago and I was just a baby but I think you'd be better off without your leg. I think you'd be able to do much more and get around better than you do now. At first it will be really hard and you'll deffinatly have pain but your still young and I'd bet within a year you'll be better off than you are now.

PM me and we'll talk

Eric

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I too have neurofibromatosis - severely, in fact. I have tumours in my spine, aorta, my lungs and face. I lost the uase of my right arm three years ago. For all intents and purposes I have an amputation as it is totally paraklysed from the shoulder to the hgand. I have a great deal of pain in my shoulderblade, shoulder, elbow and hand. The elbow and hand pain is 'phantom pain'. I'm currently awaiting a spinal stimulator top try and stop the pain. I've tried everything else from nerve blocks to aromatherapy, (useless).

The Nf has caused me a lot of problems, and I had to give up my job as a nurse in 1996 when I was only 25. I'm finding it a struggle to cope with only one arm, as I also have osteoporosis and a fused spine. What are your experiencesd of nf? Igf you'd like to email me, I'd be happy to keep in contact.

Lynn

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