Phantom Pain

In my short almost thee-week experience after having my leg chopped there are two types of phantom pain. These two types that I describe are my opinion only and have no medical basis at all.

Type one-

This is the one that most expect. It is the mind and the body getting used to fact that there is no longer a part there.

Examples:

1. Putting pants on. I am a left leg first type of guy and got my left leg chopped. So when I go to put my pants on I am reaching and pulling, reaching and pulling and reaching and pulling and nothing happens. Until I look down, laugh a little, depending on the morning use a nice appropriate expletive and try to train my brain to start with the right leg.

2. When I sit I am a leg-crossing guy. So now when I sit for about 10 to 15 seconds every hour or so I make some attempt at crossing my legs. The only problem is, there is one leg and a stump that can’t quite rest on the other leg. It really is funny to watch.

Really if you want to know what this part is like, take an hour and do your day with just one leg from 6 inches above the knee down. You can still use your thigh.

Type two –

This is the painful side. The nerves in the bone, muscle and skin are trying to get used to the fact that, one they got moved around and, two there are some of their nerve friends or family that are no longer their and they take it out on me since I gave the order to get rid of them.

The best way I can describe this pain is.

Feel free to try along.

1. You know that painful side the occurs when you hit your funny bone. Imagine that or feel free to hit that nerve if you like.
2. You know when you hand is asleep and you hit it on something. Go ahead and give it a try next time and appendage falls asleep.
3. Take the peaks of the feeling from both one and two and combine them.
4. Now every time I do something that uses the muscles in the thigh, add a throb that increases the sensation in number three. You would be surprised at how many daily functions require the use of the thigh muscles.

AS AN OOPS: I forgot to mention that most if not all of this sensation is in my calf and foot, that I don’t have! There is also this damn itch that shows up every now and then on my foot, again that I don’t have.

That is about the best way to describe what I think the two sides of phantom pain are. Feel free to look around on the old World Wide Web and see what the Docs have to say.

The beautiful thing is from what I read and hear from other above knee amputees, is that most of this will go away, and if it doesn’t the drugs get better. The other cool thing is that it is still not even close to the pain that I was living with for the last 15 years. It’s a totally different kind of pain and I have no doubt in my find that I can figure out a way to get completely drug free again.

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5 Comments

  1. Tarv, You do such a good job at decribing the phantom pain! Remember how you used to tell Grandma that when it hurts to think it is all going to your big toe? Maybe you can do that with the pain and the itch, you still have a big toe! I’ts worth a try!! Again, to hear you say that the pain now does not come close to what you had been experiencing for nearly 15 years, well, that tells me all over that you and Tara have made the best choice and we (your Dad and I) stand behind you completely..you will get a new leg and yes there is alot to do to make it happen, but, God will provide and we will all stand in awe at how it happens and is happening….

  2. I’ve been an amputee for just over three years now (April, 2004). The phantoms are weird at first, but can also be quite painful. I was told by another amputee that his got better once he started using a prosthesis. This isn’t true for everyone, but it was for me. I get an occasional ZINGER if I’ve been overactive, but, for the most part, I seldom am bothered by them. I never took any drugs for them and I’m glad I didn’t because they can be very habit forming.

    Good luck to you in acquiring a leg. I wear mine from 4AM til 10PM everyday. I’m a hairstylist so that means a lot of standing during that time. I deal with Blue Cross, They have an annual cap of $10K. I’m bk so that is pretty much what they would cover if I had a regular 80/20 plan. I also have a $1500 deductible. A good bk leg with a good foot costs around $12K.

    I just attended the national ACA conference in Atlanta. I was told that Oregon just recently passed the prosthetic parity bill. I don’t know when it goes into effect, but your insurance carrier should be removing that cap when this bill becomes law. Check with your prosthetist or local support group to find out more information.

    I’m not totally aware of what an AK goes through, but through working with my support group, I might be able to answer some questions if you have any. Feel free to contact me if you have any questions.

    Neal

  3. Neal, yes OR did pass the parity law and from my understanding it goes into effect on 1/1/08.

    At the very least it would be nice to grab a pint or coffee some time?

  4. Only if you can stop by Tulsa, Oklahoma sometime.

  5. Oh. well if I decide to do one of my road trips, Tulsa is on the must stop list.


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