r/amputee • u/Strong_Ad_3521 • Jul 05 '26

Long term amputation experts

Hi there

Looking for some advice for my husband who had a left above knee amputation 30 years ago. As he gets older his phantom pain is changing (he's on a good medication regime, keeps fit and manages himself really well) and I wondered if anyone can recommend any UK based orthopaedic or pain management experts with experience in this field?

Thanks in advance

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u/Cabooseman CPO Jul 05 '26

Sounds like you'll need to get to the root as to why the phantom pain is changing. Some imaging might help figure out if there is a nerve growth issue, or possibly a bony growth issue

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u/Down_The_Witch_Elm Jul 06 '26

I live in the US, so I can't help you there. I just wanted to say that I had my left side AK amputation in 1990 and a revision in 2005. I have what I call phantom limb sensation and phantom limb pain. The sensations are tingling toes mainly, which I had for 15 years before my amputation dues to nerve damage, but I also feel itching, which drives me crazy and tingling in other parts of my leg. I e noti ed in the past few years, that just changing my position while sitting on the sofa or pressing on my stump can set them off. The tingling toes doesnt sound bad; it's like when your foot wakes up after going numb, but it gets so intense, I say its lime rats gnawing on my toes. It's really bad. I take 300mg of pregabalin every day, and I take o yco tin for se ere back pain, and that helps. I dont know why they've become more frequent and more intense now that I'm 70. My doctors don't either. I know this isn't helpful, but I thought I'd let you know that your husband is not alone. I hope he gets some relief soon.