Surviving an Amputation

You are not alone. There are hundreds of thousands of people with amputations in the United States. Although amputation can be a significant disability, most have learned to lead happy, productive lives since their surgery.

The term "amputee" describes a condition, not a person. You are in reality a "person" who happens to be missing one or more limbs. You may dislike the term "amputee" at first, but you'll probably use it to describe yourself eventually. Just remember, inside you're the same person now that you were before.

Amputations are called by different names. Above-knee, below- knee, Above -elbow and below-elbow amputations are named after the bones they transect, namely "trans-femoral" and "trans-tibial" respectively. They are also commonly referred to as "AK, "BK, AE and BE respectively." Amputations at the joints are called "disarticulations," as in "hip disarticulation." Loss of one leg is called "unilateral" and loss of both is called "bilateral."

The part of portion of the limb you have left is commonly called a "residual limb," although some people use the term "stump." You can use either term you prefer.

Coping With the Emotional Pain

An important thing about amputation is that it permanently and visibly takes away a part of your body. For this reason, it's common for people with new amputations to grieve the loss of the limb as they would mourn the loss of a loved one.

It's normal for people with amputations, no matter how well they might have tried to prepare themselves, to go through this period of grieving before they can fully accept their new situation. This adjustment period can be emotionally painful, but it's completely normal, and absolutely necessary to deal with.

In general, your adjustment may be more difficult the more severe (i.e., higher) your amputation is, if your amputations are bilateral, and if you must rely on others for help with your daily living needs. Also, the shock tends to be more severe if your amputation was the result of an accident and you didn't have time to prepare emotionally, or if you expect your life to be profoundly affected.

It's entirely normal for you to experience anger, increased demandingness, intolerance, and frustration during this time. Despair, introspectiveness, and withdrawal -- even short term depression -- are also common, as are feelings of agitation or "jitteryness." You may be alarmed by these feelings, but there's no need to. Only if these feelings persist, do some professionals advocate seeking psychological help.

Not only are there physical challenges and doubts about the future to be dealt with, but since most of us tend to equate who we are with being physically "complete," we may see the loss of our limb as striking at our very self-image and identity. A positive self-image and an understanding that your attractiveness to others is based on your personality, intellect, sense of humor, and personal values--not how many legs you have--will be the most significant factor in your emotional recovery!

As with grieving over a death, mourning the loss of a limb is said sometimes to occur in stages. These may include:

· A shock stage, during which it seems like it's just too enormous a problem to think about at all.

· A denial stage, during which you may refuse to believe, on an emotional level, that your leg is really gone. You may also avoid thinking about the loss altogether, or tell yourself, "It's no big deal."

· An anger stage, during which you may feel compelled to find something or someone to blame, or simply to be furious with everything and everyone for apparently little reason.

· A depression stage, during which you may feel it's no use going on, or during which you can't seem to concentrate or become interested in anything.

· And, finally, a time of acceptance, during which you find that the anger and depression go away and you are able to make plans to get on with your life.

You should understand that these stages may not occur in the order they're listed above. Also, don't expect that you'll go smoothly from one to the other, or that you'll never return to a stage you thought you had finished with. But, you must also understand that all of this is normal, countless others have gotten through it, and you will, too.

During this time your family can be of great help, as can the social worker assigned to your case and visitors from your local amputee support group. Most social workers are trained in helping patients through the grieving process, and most support groups can send experienced people to visit you to share concerns, answer questions, and assure you that a return to an active, productive life is an attainable goal.

Phantom Sensation

When a limb is removed, the brain is inclined to believe it's still there and to continue to sense the presence of the limb. This is referred to as "phantom limb sensation." Until you get used to it, you may catch yourself trying to take a step with a missing foot or reaching for things with a missing hand.

Phantom limb sensation is not a true pain, but it can be disconcerting if you don't know that it's completely normal and that you can expect to experience it. Sometimes it may feel like your missing foot or arm is growing directly out of your residual limb or that the missing part is much larger than it should be. Sometimes the missing limb feels "tingly" or "on pins and needles," or part of it may cramp or itch. If the sensation ever becomes disconcerting or excessively uncomfortable, many people have found that they are able to ease it off by thinking about something else, by massaging their residual limb, or simply by ignoring it.

Phantom Pain

While phantom limb sensation is a feeling that the limb is still present, phantom pain is actually painful. Frequently, phantom pain is experienced as a feeling that the limb or a part of it is on fire, or that it's twisted in an uncomfortable position. Phantom pain can be temporary or it can last longer. It is more likely to occur if your arm or leg was painfully diseased or badly injured before it was amputated.

The causes of phantom pain are varied and not understood precisely. The phenomenon is generally thought to occur because the nerves that carry signals from the amputated part to the receptors in the brain are still intact, but they carry "wrong" signals because the part is no longer there.

There are many treatments for phantom pain, ranging from the simple application of heat, cold, or massage, to complicated surgical procedures, which most people rightfully avoid. If you are bothered by phantom pain, the best thing for you to do is talk to other people with amputations and try the simple treatments that have worked for them. Then consult your physician if none of those relieves your discomfort.

Your Rehabilitation

One way to look at "rehabilitation" is that it entails both a psychological and physical accommodation to a new reality. Psychological rehabilitation must be underway before physical rehabilitation can take place. Psychological rehabilitation might be defined as the ability to adjust mentally and accept the new circumstances. Physical rehabilitation might be defined as a return to a regular life style, based on what compromises you are willing to make in what you want to be able to do or what you must do. The most healthy way to set your rehabilitation goals is based on what you think is best for yourself, not on what others think you should look like or be able to do.

The point is that when you are uninformed or when you let others define what level of functioning is "normal" or right for you, you lose control of your own rehabilitation. Then, if you fail to measure up to their standards, you will feel that you've failed as a person. It's hard enough to learn to live a full life after a leg amputation -- and even harder after two of them. You don't need to add to your difficulties by allowing others to tell you what level of rehabilitation is right for you.

A good way to set realistic rehabilitation goals is to define what you must be able to do to accomplish the essential daily living and vocational tasks without help. Then define those tasks with which you are willing to accept help, assuming help is available. Then define those tasks you would like to be able to do independently. These are your rehabilitation goals.

Finally, you will need to figure out what you have to do to attain your goals. This is your action plan. These kinds of things may include working extensively with a physical therapist, getting tips from others with similar amputations, purchasing or having made for you certain assistive devices, deciding to use artificial limbs, or learning to do without.

Preparation for a Prosthesis

An artificial limb is called a "prosthesis." Before you select a prosthetist (a "prosthetist" is one who makes and fits artificial limbs) you will have to prepare your residual limb by shrinking and desensitizing it and by becoming as physically strong as you can.

Residual limb shrinkage is accomplished by wrapping it with an elastic bandage or by wearing a "prosthetic shrinker," which is a tubular elastic sock which is pulled or rolled onto the residual limb. You may have been taught in the hospital to wrap your residual limb with an elastic bandage using a "figure eight" motion and to make it tighter on the end than at the top. If you were not taught this, you will want to ask your physical therapist or prosthetist to teach you, because if you don't wrap it correctly, you can cut off the circulation, doing more harm than good. Eventually, this wrap will shrink and shape the residual limb's muscles so a prosthesis can be used.

Desensitization is required because the end of your residual limb and scar will probably initially be very sensitive to touch. Desensitization is accomplished by first tapping the sensitive area lightly with the fingers of your other hand. Later, you can rub the end of your residual limb lightly with a towel or wash cloth. Eventually, the sensitivity will go away.

Exercises are necessary to regain and maintain full range of motion in your remaining joints and to re-strengthen the muscles in the residual limb.

If you are a lower extremity amputee, exercises to strengthen your arms and shoulders are also important, since you will have to rely on those muscles to use crutches and sometimes to transfer from one surface to another, If you haven't already been taught the proper exercises to do, you should consult your physical therapist.

If you are an upper extremity, are necessary to re-strengthen the muscles in the remaining part of your amputated arm and shoulder, including the opposite shoulder, which will be used to help control your prosthesis. If you haven't already been taught the proper exercises to do, you should consult your physical therapist. If you don't plan to use a prosthesis, it's still a good idea to do all of this, because you will need to use your residual limb to help you accomplish your daily living tasks.

Prosthetic Rehabilitation for an upper extremity Prosthesis

"Prosthetic rehabilitation" means resuming a normal life through the use of a prosthesis.

Most people with leg amputations use prostheses. Most with arm amputations do not. This is because the functions of an arm and hand are much more complex than those of a leg and foot, and artificial arms aren't as good at replacing those functions as artificial legs.

The things on the end of an artificial arm -- cosmetic hands (i.e., a hand that is shaped like a hand) and hooks (i.e., two hook-shaped steel rods) are called "terminal devices." Terminal devices have several motions – opening and closing, rotation and flexion. Opening and closing are self explanatory, and are controlled by the person, either by a harness attached to the opposite shoulder or by electric motors. Rotation is a circular "twisting" of the wrist and can be controlled in the same ways. Flexion is the motion that "waves" the hand up and down. It is usually accomplished by moving the terminal device into the desired position with the other hand or by pushing it against the body.

In general, hooks are considered much more functional than artificial hands, especially for manipulating smaller objects and doing rough work. Conversely, hands are generally considered more cosmetic. Some people feel it's more important for them to look "normal," so they wear a prosthesis with a cosmetic hand Others are far less interested in how they look than what they are able to do, so they opt for the functionality of hooks.

The chief drawback of all terminal devices is that they don't have any feeling. One person who wears a prosthesis part time says that using an artificial arm is like trying to do things with pliers on the end of a stick.

Despite this, many people with arm amputations use and are satisfied with their prostheses. The important thing to remember is, what's right for you should be determined by your rehabilitation goals and the things that are important to you -- not what you think society expects you to look like.

In general, the more arm you have left, the easier it will be for you to use a prosthesis As the site of the amputation moves upward toward the shoulder, however, range of motion, strength, and leverage decrease, as does the likelihood of getting the prosthesis to do what an ordinary arm can do.

Prostheses can be body-powered or electric. In the former case, a cable connected to the terminal device -- and to the elbow joint, if your amputation is above the elbow -- is connected to your opposite shoulder and the prosthesis is operated by body movements.

The electric arm, sometimes called a "myoelectric prosthesis," is operated by electric motors within the artificial arm. The motors are controlled by sensors inside the prosthesis socket that sense small electrical currents generated by nerves in the residual limb. This occurs when there is normal motion and related muscle activity in the residual limb.

Each kind of prosthesis has its advantages and disadvantages, and you will want to understand them thoroughly before you decide to acquire one or the other.

Prosthetic Rehabilitation for a lower extremity Prosthesis

"Prosthetic rehabilitation" means resuming a normal life through the use of a prosthesis.

You may have been fitted with an Immediate Postoperative Prosthesis (IPOP) when you were still in the hospital. Sometimes a physician will decide to cover your residual limb with a plaster cast instead of a soft bandage before you leave the operating room. (This is commonly done to manage expected postoperative swelling.) After a few days, the physician may decide to attach a metal post and a foot to the cast and "get you on your feet" using this IPOP.

At any rate, after returning home for a suitable period of healing and residual limb preparation (see above) you will be ready for a "real" prosthesis.

The first step in this process is the development of your prosthetic prescription. Your physician is responsible for approving this prescription, but it is a very good idea to have your prosthetist involved in writing it. This is because prosthetists usually know much more than physicians about what kind of prosthesis will be best for you. The important point to remember about prosthetic prescriptions is that you must explain fully to your physician and prosthetist exactly what level of activity you expect to return to after your rehabilitation. Artificial legs range from "basic" to "high tech" depending on what components are used to construct them. For example, if you were a healthy, active person before your surgery and fully expect to be able to resume your former level of activity, a "basic" leg will not serve you well.

The first step in making your prosthesis will be to take measurements of your residual limb. Then, a mold of your residual limb will be taken by placing a plaster cast on it, carefully removing and reassembling the cast after it has hardened, and filling it with plaster. When that has hardened, the cast will be peeled away, leaving a plaster duplicate of your residual limb to be used in making the new prosthetic socket.

The part of the prosthesis that attaches to your body is called a socket, and it's the most important part of the limb. Knowing what knees, feet, and such are available on the market might be called a science, but making a socket is an art. The reason is that every residual limb is different and your socket must be custom made to fit you specifically. Also, since an artificial leg must bear your entire weight and still feel as comfortable as possible, it must fit exactly, supporting your weight where it should and avoiding pressure in other areas.

Your prosthesis can be held on in a variety of ways, such as with straps, a foam liner, a silicone sheath, or suction. The best way for you will be indicated in your prescription.

Your prosthetist will probably make your first socket out of clear plastic so the way it fits can be seen through the clear socket wall. If the shape isn't exactly right, the prosthetist can make the necessary changes by re- heating and bending the plastic appropriately. When a proper fit has been achieved, a "temporary" prosthesis may be made. This is because your residual limb will continue to change shape and size for several more weeks or months. At the appropriate time, a "definitive" prosthesis will be constructed for you. A cosmetic covering--a piece of foam carefully carved to match the shape of your other leg--is usually provided. This is the prosthesis you will use every day until it wears out or otherwise needs to be replaced.

The importance of training in how to use ther prosthesis cannot be overemphasized. Your prosthesis is a tool, and like any tool, it won't do what it's designed to do unless it's used correctly. You will want to insist on receiving adequate training either from your prosthetist or physical therapist--or both.

Also, you will want to watch your weight carefully. If you gain too much, your prosthesis may no longer fit--and buying a new, expensive prosthesis is a very different proposition than buying new clothing!

Care of the Residual Limb

The skin and underlying tissue that typically ends up on most residual limbs after an amputation is pretty delicate and is subject to a number of problems, including irritation, further injury, and infection. Therefore, learning how to care for your residual limb is an important part of your rehabilitation.

If you wear a prosthesis there may be special problems, such as rubbing or irritation caused by perspiration or swelling inside the socket. Usually these problems are relatively easily resolved by bathing the residual limb daily using mild soap and lukewarm water, by rinsing thoroughly with clear water, and by patting the limb dry rather than by rubbing vigorously.

The inside of the prosthesis socket should also be cleaned daily, and if prosthetic socks are worn inside the prosthesis, they should be changed and laundered at least daily to avoid a build-up of irritating perspiration.

If you use a prosthesis, inspect your skin daily, and if skin problems are found, promptly call them to the attention of your doctor so as to avoid developing more severe problems.

Work

The issue of your career has psychological, as well as the obvious practical ramifications.

Psychologically, the issue involves how strongly you have identified yourself with your career or vocation and whether or not your amputation will enable you to continue to engage in that line of work. Those whose work has become an integral part of their very identity and who have to give up that work because of their disability can suffer what is commonly called "an identity crisis." This can make them feel like they don't know who they are any more.

If you are able to return to your job after your amputation, as many people can, you will probably have no trouble like this. But if you are one who sees yourself very strongly in terms of your work and you have to seek different work after your amputation, you will not be puzzled by the reaction you may have. Simply recognizing it for what it is can go a long way toward relieving the feelings.

Recreation

Your amputation is no reason for you to give up sports or recreation. If you enjoyed snow or water-skiing, tennis, horseback riding, golf, swimming, or just the outdoors in general before your amputation, you can certainly continue that involvement afterward--either with or without your prosthesis.

Many people have elected to participate in sports they didn't engage in before their amputations as a way to meet new people and to improve their physical conditioning as a means to help with their rehabilitation.

Driving

If you will need vehicle modifications, you should contact your state department of rehabilitation for information about available assistive devices and where they can be obtained. Also, don't forget to contact people with the same amputation as yours through your support group to see how they do it.

Driving for upper extremity amputees

It will still be possible for you to drive, either with or without modifications to your car. In general, if you can reach and operate all your car's controls either with your "good" hand or with the help of your prosthesis, or with your "good" hand and residual limb, you will not need modifications. Indeed, many people with bilateral below-elbow amputations can drive as easily without prostheses or modifications as the rest of us can with both hands. However those with bilateral above-elbow amputations generally need vehicle modifications.

Driving for lower extremity amputees

It will be possible for you to drive either with or without modifications to your car. In general, if you still have one healthy leg and an automatic transmission, you won't need modifications. If your right leg was amputated and you're not comfortable operating the accelerator with your left foot, an extension pedal can be installed so the accelerator can be operated from the left side. In general, most prosthesis users with below- knee amputations, even bilateral amputations, can operate a manual transmission without modifications.

For those who have bilateral amputations and are not prosthesis users or those who are simply uncomfortable operating the pedals with their prosthetic feet, a wide variety of hand controls are available.

Conclusion

A final word about your rehabilitation: All amputations are disabling to some degree, and some are quite a bit more disabling than others. But you have a life to live and you will want to get on with it, making it as enjoyable and productive as possible.

You might want to adopt the same philosophy many other people have, that you need to use everything you've got to make your life as normal as possible. For an upper extremity amputee this means using your prostheses when they allow you to do things more normally, using your residual limbs when that works better, using your feet when that's useful, and using as many adaptive devices as you can together with all the rest to make your life easier.

One person, who has both an above-elbow amputation and a shoulder disarticulation, calls this, "a multi-media approach." She uses all these methods to live an amazingly normal life at home and at work. You can do it, too!

As a lower extremity amputee you will find that dealing with crutches, wheelchairs, and artificial limbs is frustrating at times and it will probably be harder to do the things you did easily before. But if you concentrate on what you have, rather than what you are missing, your life will return to a level of "normalcy" that may surprise you.

© Richard L. Mooney, MAAF

Article provided by
"The Mutual Amputee Aid Foundation, Los Angeles, CA."
reprinted from the "Western Amputee Support Alliance"
Web site at http://www.usinter.net/wasa/