Thursday, December 6, 2007

Phantom Limb Pain

You have heard of this. Everyone knows about phantom limb pain. I knew about it even before my daughter had her foot amputated. The idea conjures up images of war veterans without legs, lying and crying in their hospital beds. I'm reminiscing about old M*A*S*H episodes now.

I thought about phantom limb pain and how they may affect Madeleine. I was assured that this would not happen to someone so young. Dr. Mosca told us that if we amputate young (under 2) she would not have phantom pain. He said there was no known research that showed babies to have pain after an amputation. This was one reason to do the surgery while she was young. Another reason is that she would not have attachment to that body part. Granted.

I'm not sure that I believe this now. I think that maybe children do experience phantom limb pain but cannot tell us about it therefore we think it doesn't exist. However, even without words Madeleine is a great communicator. For instance, if she wants to read more books (as a way of delaying bed time) she points to the books, the rocking chair and whines a bit. So, why then, when she cries in the middle of the night and points to the bottom of her leggie should I not assume that she is experiencing pain? She will often hold or grab the bottom of her leg at night. Once, I came in to answer her drowsy cries and she was biting at the end of her leg.

In the article highlighted above the author writes:
Phantom limb pain – pain appearing to come from where an amputated limb used to be – is often excruciating and almost impossible to treat.

He then goes on to say:
After amputation of a limb, an amputee continues to have an awareness of it and to experience sensations from it. These phantom limb sensations are also present in children born without a limb, suggesting that perception of our limbs is 'hard-wired' into our brain and that sensations from the limbs become mapped onto these brain networks as we develop.
If phantom limb sensations are normal then so too, alas, is phantom limb pain. This occurs in a majority of those who lose their limbs. (1) In fact, limbs do not need to be lost; it also occurs in conditions in which the brain is disconnected from the body, such as peripheral nerve injuries and after spinal cord injury, when an area becomes insentient (and usually paralysed).

The pain is described in various ways: burning, aching, 'as if the hand is being crushed in a vice,' etc. Such words, however, cannot fully encompass the experience of living with such a pain.

If this article is true than I can assume that Madeleine is experiencing some sensation. To ease this I rub her leg, I talk to her about it and reassure her that all is okay and she is not in a painful situation. Of course I worry about this. It makes me sad. But still, I do not regret our decision to ampute. If we had lengthened I'm assuming the pain would be greater.

Madeleine wakes up more than Max, usually. This is why I could never let her "cry it out".


Greg & Joanna said...

Hi there - I happened upon your blog and I just wanted to say your twins are beautiful. I enjoyed reading your posts (you write very well!). I have 10 month b/g twins as well. Also, I love their names - especially Madeleine. So cute!


Amy Bouchard said...

Hello again, this is Amy here in Southern California. Our daughter Helen (FH-left) has also experienced what you describe Madeleine as doing. She will be 2 in late January and also still wakes up once a night and is not breastfed. She is not hungry when she wakes up, just needing company/comfort I think. I certainly hope it gets better for all of us.
Let us know if you find any relief.