Post-amputation pain is one of the most common complaints heard by the staff of the Amputee Coalition, and how to manage the pain is one of the most frequently asked questions. Ideas about management are one of the frequent topics of conversation at amputee support group meetings and on amputee discussion list services on the Internet.
Why is there so much discussion about post-amputation pain?
Because it is one of the most commonly experienced situations following an amputation. Actually, there are several types of sensations following an amputation that should be discussed when referring to post-amputation pain. Some of them are extremely painful and terribly unpleasant; some are simply weird or disconcerting. In one form or another they are experienced by virtually 100% of people following an amputation. This article will attempt to explain them and differentiate between them so that conversation about them will be meaningful and precise.
Future issues of inMotion will discuss in detail what is known about the cause of pain and its management. First, however, we need to have a common use group of terms to describe and define the different kinds of pain.
Immediate Post-op Pain
Immediate post-op pain is the pain experienced after any surgical procedure where skin, muscle, bone and nerves are cut. Essentially everyone experiences some degree of post-op pain following an amputation. It can usually be controlled with pain medication and subsides fairly rapidly as swelling goes down, tissues begin to heal, and the wound stabilizes. This is simply part of the natural healing process.
It appears from recent research that it is critically important to adequately treat immediate post-op amputation pain because adequate early control decreases the chances of severe problems later. Surgeons are being encouraged to be much more liberal with pain medication in the immediate post-op period. Continuous post-op epidural analgesia is being recommended for pain management since it can be very effective. Adequate doses of narcotic and non-narcotic analgesics (pain medicines) should be prescribed in a fairly rapidly decreasing program to fit the decrease expected in the pain itself.
For amputees who are experiencing an unusually great amount of post-op pain or pain in the phantom limb, (which has been removed), early referral to a comprehensive pain management program is extremely important. Early referral for expert management can remarkably decrease long-term problems with post-amputation pain. Here, an ounce of early treatment can be worth a pound of late treatment.
Phantom sensation is a term used to mean any type of sensation which the amputee experiences in the portion of the limb that has been removed. It can include: tingling, warmth, cold, pain, cramping, constriction, and any other imaginable sensation. Essentially, any sensation that the limb could have experienced prior to the amputation, (and some which it could not), can be experienced in the amputated "phantom" limb.
Virtually all amputees who are old enough to talk have reported phantom sensations of some sort, especially if asked. Some amputees will not voluntarily mention it since they think that it indicates that their mind is unhinged! It is actually not crazy thinking at all. Instead, it simply means the part of the brain, which has always felt that limb, is still reporting some sensations to the rest of the brain. What the thinking part of the brain knows (that the limb is gone) may be different from what the feeling part of the brain reports (that the nonexistent limb is being squeezed).
Essentially, all amputees who are questioned report that there is phantom sensation present. Some children born without a limb even report that they can feel the part that they never have had present. So long as the sensation is not unpleasant, there should be no real problem once the reality of phantom sensation is explained. It is usually only when the phantom sensation is unpleasant, noxious, painful, that the phantom sensation is a problem that needs specific treatment.
The really difficult part of post-amputation pain to manage is phantom pain. It is defined as pain in the missing or amputated part of the limb(s) or some part of it. It is important, from a treatment standpoint, to differentiate between phantom pain and pain in the residual limb (stump). They are very different problems with totally different causes and very different treatments. Phantom pain is never experienced in the residual limb (stump) even though it can be triggered by something happening to the residual limb. Residual limb pain is always experienced in the portion of the limb that is present.
Unfortunately, phantom pain is experienced by 60-70% of new amputees and after a year as many as 40% of them may still be bothered by it in a significant way. Often it diminishes a lot in its severity over time. Many amputees report that it becomes much less frequent as time goes along; however, when it recurs it may be just as bothersome as when it was first experienced.
There is tremendous variability of this phantom pain. It can be extremely unpleasant and even disabling for some amputees. It is complex. resistant to treatment and very frustrating to amputee and caregivers alike. It is really this part of post-amputation pain that this series of articles will focus on since it is the most severe part of the problem.
Residual Limb Pain
Many amputees experience pain in the part of the limb left after the amputation (residual limb, stump). Immediately after surgery it is expected due to the massive tissue disruption of the surgery itself. Later, the pain can be due to a number of mechanical factors such as poor prosthetic socket fit, bruising of the limb, a neuroma in an unprotected location, chafing or rubbing of the skin, and numerous other largely mechanical factors. Pain in the residual limb can be caused by poor circulation and nerve damage from diabetes.
Since there are numerous problems that can result in pain in the residual limb, it is important to discuss residual limb pain with your surgeon, physician, and/or prosthetist. Each of them may have valuable input into solving the problem before it becomes more severe. Further discussion of residual limb pain will also occur in this series of articles.
Unfortunately, even in 1998, our understanding of the way at the brain handles pain and other sensations is still fairly crude. A lot of guesswork is still involved. We can observe many things that we do not truly understand. That makes a reasonable discussion of pain much more difficult. It also makes devising a rational plan of treatment very difficult.
The problems of management are made much more complex by the differences between amputees. The teenage girl who has a leg removed at the hip for cancer is very different from the senior with diabetes and an amputation below the knee. Both of these are very different from the mill operator whose arm is pulled off by a machine. Still different is a motorcycle rider whose leg is crushed, stabilized, does not heal, and finally requires an amputation.
All of these issues underline the fact that management of pain is a major problem. This series of articles is not planned to allow you to treat your own problems without professional help. They are intended to allow you to become an informed consumer who can manage your own care, ask the right questions, insist on adequate management and information, and seek an optimal outcome for yourself. Perhaps these articles will even help the professionals who are giving care lo better understand the scope and severity of the problem.
The authors of this series have not finished writing the articles yet. They have done tremendous research and will be doing more. They will contact numerous experts and researchers so that the information will be current and valid. They will rely upon you, the readers, for feedback to make the articles more useful and meaningful.
The authors cannot answer each question that comes to InMotion regarding pain; however, they will try to use those questions to better aim their research and writing. Often, individual questions will be worked together with other questions to provide a comprehensive answer.
You may send your question regarding pain to:
900 E. Hill Avenue Suite 205
Knoxville, TN 37915
Call toll-free: 1-888-AMP-KNOW
E-mail: Amputee CoalitionEdward@aol.com