Post-amputation agony is one of the most prevalent complaints heard by the team of the Amputee Coalition, and how to manage the pain is one of the most often asked questions. Ideas about management are among the frequent points of conversation at amputee support group meetings and on amputee discussion list services on the Internet.
Just why is there so much discussion about post-amputation pain?
Because it is one of the most typically experienced situations following an amputation. Actually, there are several varieties of feelings following an amputation that should be discussed when referring to post-amputation pain. Several of them are extremely painful and awfully unpleasant; some are simply weird or disconcerting. In one form or another they are experienced by practically 100 % of people following an amputation. This article will attempt to explain them and differentiate amongst them so that conversation about them will be meaningful and precise.
Immediate Post-op Agony
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 normally be controlled with pain medication and subsides fairly rapidly as swelling reduces, tissues begin to heal, and the wound stabilizes. This is simply part of the natural healing process.
It emerges from recent research that it is critically important to adequately treat immediate post-op amputation pain because sufficient early control decreases the chances of severe problems later. Surgeons are being recommended to be a lot 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 plan 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 possibly be worth a pound of late treatment.
Phantom sensation is a phrase used to mean any kind 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), could be experienced in the amputated “phantom” limb.
Pretty much all amputees who are old enough to talk have reported phantom sensations of some sort, especially if asked. Some amputees will not freely 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 region of the brain knows (that the limb is gone) may be different from what the feeling element of the brain reports (that the nonexistent limb is being squeezed).
Basically, all amputees who are examined 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. As 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 component 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) although it could be triggered by something happening to the residual limb. Residual limb pain is always experienced in the portion of the limb that is present.
Regrettably, 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 serious way. Often it diminishes a lot in its severity in time. Many amputees report that it becomes much less frequent as time goes along; however, when it recurs it may be exactly as bothersome as when it was first experienced.
There is tremendous variability of this phantom pain. It could 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 surgical procedure it is expected because of the the massive tissue disruption of the surgery itself. Later, the pain can be due to a variety 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 necessary 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.
Sadly, even in 1998, our knowledge of the way at the brain handles pain and other sensations is still fairly crude. A lot of conjecture is still involved. We can observe many things that we do not truly understand. That makes a reasonable discussion of pain much even more difficult. It also makes devising a rational plan of treatment very difficult.
The problems of management are made much more perplexing 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 highlight 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.