Thursday, August 18, 2011

Phantom Pain

Brain: "Ummm...where did Leftie
go? I have work for him to do!"
You may have heard about phantom pain or sensations in relation to amputees. Basically, even though an arm or leg is gone, the person can still feel pain or discomfort as though it were still part of the body. What you may not have known is that this can also happen with a missing organ. Yes, I have experienced this where Leftie the kidney used to be.

As with most things medical, the sensation varies from individual to individual. It can ache, burn, feel cold, throb, tingle--any kind of pain/feeling really.  For me its a sharp pang, towards my back that aches a little into the surrounding area. Sometimes it is a sharper pain closer to the front, between two incisions. Nothing terrible but something I didn't have before the surgery. For me it can occur when I am doing nothing at all (watching TV, sitting in a meeting). It also happens sometimes when I am doing something a little more taxing like running or eating food that might not be the best idea (think deliciously good salty deep fried items with or without a beer). On occasion I know I've had them when I've been dehydrated. It is more annoying than it is painful-discomfort more than anything. A donor friend of mine told me that for a few months post surgery she would get phantom pains after eating french fries or drinking a glass of wine. Of course, not everyone experiences this but it is interesting to understand what is going on so that some of use do.

Nerdy science types would argue that technically, all sensation from internal organs is "phantom pain." This is because the nerves supplying the internal organs form plexuses (which are more like spider webs instead of straight wires like the nerves in our limbs). They travel a good and less direct distance before joining with the spinal cord which then of course leads to the communication with your brain and the feeling of pain. That's why when we have real organ pain we feel it in other areas (also know as referred pain). People having a heart attack often feel pain in their left arm, and when ladies are blessed with time of the month cramps, they can experience back or upper leg aches. Check out this video to show you the "other places" you might feel organ pain.

Phantom pain can occur from right after surgery. For some people it might continue for a few weeks or months. Many amputees report feeling phantom sensations for years after their injuries. Again, everyone is different. Why does it happen? In the early days, scientists thought they might be caused by neuromas in the tip where the organ or limb was lost by surgery. Neuromas are a cluster or clump of nerve tissue that are a result of surgery. While they were on to something and they CAN be a cause for phantom pain, they aren't the only thing to blame. They know this because sometimes people born missing a limb or organ feel phantom pains too-so its not just about surgery side effects. They haven't quite figured out all of the causes or how phantom pain works. In my head I just picture the brain not really being aware something is missing and it keeps sending out commands, communications-when the message gets to the assigned location, nothing is there so it kind of sparks or shorts, like a live wire, causing pain. Not very scientific I know, but that's my explanation (and it works for me-remember-I am not a doctor!).

Most people just put up with the pain as for many it does go away with time. In some cases, pain medication is prescribed and in very rare situations surgery is done either to remove neuromas (which can help) or in very extreme cases, brain surgery might be involved. Those last two examples only happen if the pain is debilitating and goes on for very long periods of time without improvement or response to other treatments.

I've been trying to focus on what I am doing or what I've just done when I get my "Phantom Leftie" pains. While they aren't overly disruptive, they have been a good physical reminder to watch what I eat and drink, and make sure I am exercising appropriately.

The mind/body relationship is a very mysterious thing isn't it?


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