Wednesday, June 27, 2007



The last two days I've been working with the students at UIndy again. I was a "patient" for four of the PT students. The first day they came in (individually) and worked with me to evaluate my mobility, range of motion, and strength. The second day they worked with me on exercises that they (individually) came up with for a home exercise program. On the second day, while one of the students was working with me, I had a sharp phantom pain and, along with it, extremely strong phantom sensations. It was as if, for five to ten seconds, everything that is gone, from the tips of my toes to my knees, woke up all at once. It basically felt like there was a strong current of energy flowing through my lower legs.

I know I've mentioned the phantom pains/sensations before, but I don't know that I've ever really described them in any detail, or what kind of impact they have on my daily life. What I've described above is by far the most intense sensation that I've had yet. In general, the sensations are much more mild and I can usually ignore them altogether. The pains, however, are a much different matter. I'll get to that in a moment, for now, lets stick with the sensations.

My right leg doesn't bother me much. From time to time I'll get a tingly feeling coming from someplace around where my calf muscle should be, or occasionally it will feel like my foot is trying to wake up. My left leg, on the other hand, is pretty much always active. I constantly have the pins and needles feeling from where the bottom of my foot and ankle should be, and sometimes from where my calf or the underside of my knee should be. The pins and needles thing is pretty much constant but, it's so regular that I don't really pay attention to it unless it intensifies like it did the other day. The sensations come in waves, or pulses, which intensify and fade, but it's never been as strong as it was yesterday.

As I said, the sensations are more like the pins and needles feeling you get after your limbs have fallen asleep, but sometimes they also feel warm. I've wondered lately if it's actually some memory imprint that the fire left on my nerves. When the waves are intensifying and fading I almost feel as if the flames are still licking at my legs but without causing severe pain. I can usually get the sensations to stop by rubbing on the residual limb and giving the nerves a different sensation to focus on, however, sometimes the sensations return as soon as I stop. This is most distressing when I'm wearing the prostheses and can't get to my legs to rub them, or during the night when they return as soon as I stop rubbing. Indeed, there have been nights when I've been awakened by the sensations, and could not return to sleep because they went on for several hours at an intensity that I could not ignore. This is why it's important to have a good book by the bed but, sometimes even an enthralling story is not enough to make them go away.

The pains are totally different. They range in intensity from a pinch, to a sharp pain, to severe muscle spasms. The severe muscle spasms are the worst because they will go on for several seconds at a time, and I'll feel a muscle twitching uncontrollably, and painfully, that no longer exists! These come on unannounced, and frequently at an intensity that I can't hide. Just this afternoon, while at lunch with my boss, in the middle of a conversation, I let out an involuntary "arrgh!" and reached for my right calf as my leg involuntarily raised up with the pain. The pains don't last too long but, as happened this afternoon, will continue to repeat for several minutes at a time. Sadly, there's nothing I can do to ease the pains. I just have to wait until they subside.

Luckily, the Baclofen that I take each morning and night does help keep them under control but, it doesn't eliminate it all together. Renee and I talked about this yesterday and we may start to look at finding another alternative. It's strange to say, but I'm not sure I want them to go away completely. Sometimes it's nice to have a reminder of what it felt like to have my lower legs, even if it is only the painful or uncomfortable sensations that I get to experience now. When I'm wearing the prostheses and I have mild sensations it almost feels as if the legs are real. The sensations actually react to my steps so it feels kind of like it does when you try to walk on a foot that's fallen asleep. The other reason that I don't want to see them go away completely is that it's kind of a fun topic to discuss. Of course, the questions generally don't come up until I make a strange face or grunt with pain at an inappropriate time (is there an appropriate time?) but it's always a great way to strike up a conversation!

I have never noticed you making odd faces when I am around. Maybe I am some type of mystic pain relief and just to have me in the room relieves your pain? Or maybe I am not very attentive to your needs? I'll have to pay more attention to you from now on. Maybe I'll have to start sitting across the room from you and stare intently at you.

Thank you for sharing this with us. I thought it especially interesting to hear about the sensations you're experiencing where your lower extremeties should be. You describe it so perfectly, I can almost feel what you're saying - the pins and needles. (I hope that make sense!) It was so great to see you last weekend!

Love you cousin!
Have you tried printing all of these pages into a book? Your descriptive detail is outstanding. I feel like I am right there with you.
Sorry about the sensations, at least now you know your still human and not so much bionic. Although you would make a cool 6 million dollar man, with Star Wars additives of course!!!!
Answer your emails and let's get together for ice cream - still :-)
Love ya,
We appreciate your work in educating us and your frankness in doing so. At some point, I know I will find it useful in working with patients through emergency services, even in our little burg, so you continue to help others that you will never know...well, I'd better say probably, after the stories of Perrin and Layla and all.
I now know how my father felt with his phantom pains he was never able to describe it as well as you did. I do know that his did seem less frequent as the years went on with his leg. So hopefully yours will too.

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