The phantom in me

Today has been relatively quiet, the Consultants and physios are not in and it is more relaxed in the morning. I have done my exercises today and increased my reps slightly but will keep them the same tomorrow. I had another wonderful visit today from a former colleague, he brought me some nice juicy grapes and my favourite ‘Pink Lady’ apples. He looked really well and it was great to hear about his new career and what he has been up to.

Last night I was quite restless and part of the cause was phantom pain. Bob, a very good friend of mine, who has been a below knee amputee for many years says “Pain is no longer in my vocabulary, I feel only degrees of discomfort”. One dictionary definition states:-

Phantom Limb Pain
Pain felt by an amputee that seems to be located in the missing limb

I would like to add the following in to that mix:-

An unelaborated elementary awareness of stimulation; “a sensation of touch”

Before I had the surgery, I was of course warned, about having phantom pain and that for some people it goes and others have it forever. Because I had nerve pain before the surgery the chances of me having this phenomenon were very high. Before the operation I had read a few people’s accounts and spoken to Bob about his experience, they go from an itch that you can never scratch to feeling part of the limb which aches. Now I know that these accounts cannot be false and I completely believed what Bob was telling me but I just could not comprehend it. I, as with many people, could not understand how, when you can see and know that the limb has gone, you can still feel it.

My experience of it started as soon as I woke up in recovery, my heel felt sore and I wanted to wiggle my toes, that were of course, no longer there. The feeling was so real that I asked a couple of people to confirm the leg had been amputated. Following that as soon as I felt the pain in my stump (as the epidural wore off) the feeling of the foot went away for a very short time. Since the surgery I have felt my foot almost constantly and on a couple of occasions my knee. One example of the knee was as if one of the old wounds was weeping and the odd ache but thankfully that has been about all. The foot has been very different and it has moved from where the foot should be to just outside and even in the stump. The foot and toes have had pins and needles, been compressed, numb, itched and had stabbing pains. It is that pronounced that I know exactly what part of the toe, foot, ankle or leg it is, what position it’s in and where the location of it is. It is the most bizarre feeling I have ever encountered and something I don’t think you would ever be able to grasp until you have felt it. For me personally I would say I have had pain, discomfort and sensations but whatever you have, or call it, I certainly agree with Bob that there are many degrees of it. I only hope that it will subside and fingers crossed I may loose my phantom permanently.

Note: Everyones experience is personal and different, if you would like to know more about mine, or would like share your experience, then please leave your comment.

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