COPING WITH AN ARM AMPUTATION



  You are not alone. There are hundreds of thousands of people withamputations in the United States. Although amputation can be asignificant disability, most have learned to lead happy, productive livessince their surgery.

  The term "amputee" describes a condition, not a person. You are inreality a "person" who happens to be missing one or more limbs. You maydislike the term "amputee" at first, but you'll probably use it to describeyourself eventually. Just remember, you're the same person now thatyou were before you lost your arm.

  Arm amputations are called by different names. Above-elbow andbelow-elbow amputations are commonly referred to as "AE" and "BE."Amputations at the joints are called "disarticulations," as in "shoulderdisarticulation." Loss of one arm is called "unilateral" and loss of both iscalled "bilateral."

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

Coping With the Emotional Pain

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

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

  In general, your adjustment may be more difficult the more severeyour amputation is, if your amputations are bilateral, and if you must relycompletely on others, at least initially, for help with your daily living needs.Also, the shock tends to be more severe if your amputation was the resultof an accident and you didn't have time to prepare emotionally, or if youexpect your life to be profoundly affected. Thus, if you were an athlete orconcert pianist, for example, you might be expected to have a more severeinitial reaction than if your work is of a kind that will be less affected.

  It's entirely normal for you to experience anger, increaseddemandingness, intolerance, and frustration during this time. Despair,introspectiveness, and withdrawal -- even short term depression -- are alsocommon, as are feelings of agitation or "jitteryness." You may be alarmedby these feelings, but there's no need to. Almost all people have them andthey usually get over them in a relatively few weeks or months. Only ifthese feelings persist, do some professionals advocate seeking psychologicalhelp.

  Not only are there physical challenges to be overcome and doubts aboutthe future to be dealt with, but since most of us tend to equate who we arewith being physically "complete," we may see the loss of our limb as strikingat our very self-image and identity. A positive self-image and anunderstanding that your attractiveness to others is based on yourpersonality, intellect, sense of humor, and personal values -- not how manyarms you have -- will be the most significant factor in your emotionalrecovery!

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

  You should understand that these stages may not occur in the orderthey're listed above. Also, don't expect that you'll go smoothly from one tothe other, or that you'll never return to a stage you thought you hadfinished 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 socialworker assigned to your case and visitors from your local amputee supportgroup. Most social workers are trained in helping patients through thegrieving process, and most support groups can send experienced people tovisit you to share concerns, answer questions, and assure you that areturn 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 thereand 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 yourselfreaching for things with your missing hand.

  Phantom limb sensation is not a true pain, but it can be disconcerting ifyou don't know that it's completely normal and that you can expect toexperience it. Sometimes it may feel like your hand is growing directly outof your residual limb or that the missing part is much larger than it shouldbe. Sometimes the missing limb feels "tingly" or "on pins and needles," orpart of it may cramp or itch. If the sensation ever becomes disconcertingor excessively uncomfortable, many people have found that they are ableto ease it off by thinking about something else, by massaging their residuallimb, 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 experiencedas a feeling that the limb or a part of it is on fire, or that it's twisted in anuncomfortable position. Phantom pain can be temporary or it can last

longer. It is more likely to occur if your arm was painfully diseased orbadly 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 thatcarry signals from the amputated part to the receptors in the brain arestill intact, but they carry "wrong" signals because the part is no longerthere.

  There are many treatments for phantom pain, ranging from the simpleapplication of heat, cold, or massage, to complicated surgical procedures.Very few people have to resort to surgical treatments, however. If youare bothered by phantom pain, the best thing for you to do is talk to otherpeople with amputations and try the simple treatments that have workedfor them. Then consult your physician if none of those relieve yourdiscomfort.

Your Rehabilitation

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

  The point is that when you are uninformed or when you let othersdefine what level of functioning is "normal" or right for you, you losecontrol of your own rehabilitation. Then, if you fail to measure up to theirstandards, you will feel that you've failed as a person. It's hard enough tolearn to live a full life after an arm amputation -- and even harder after twoof them. You don't need to add to your difficulties by allowing others to tellyou what level of rehabilitation is right for you.

  A good way to set realistic rehabilitation goals is to define what you mustbe able to do to accomplish the essential daily living and vocational taskswithout help. Then define those tasks with which you are willing to accept help, assuming help is available. Then define those tasks you would like tobe able to do independently. These are your rehabilitation goals.

  Finally, you will need to figure out what you have to do to attain yourgoals. This is your action plan. These kinds of things may include workingextensively with an occupational therapist, getting tips from others withsimilar amputations, purchasing or having made for you certain assistivedevices, 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 toprepare your residual limb by shrinking and desensitizing it and bybecoming as physically strong as you can.

  Residual limb shrinkage is accomplished by wrapping it with an elasticbandage or by wearing a "shrinker," which is a tubular elastic sock which ispulled or rolled onto the residual limb. You may have been taught in thehospital to wrap your residual limb with an elastic bandage using a "figureeight" motion and to make it tighter on the end than at the top. If you werenot taught this, you will want to ask your physical therapist or prosthetistto teach you, because if you don't wrap it correctly, you can cut off thecirculation, doing more harm than good. Eventually, this wrap will shrinkand shape the residual limb's muscles and prevent them from becoming"flabby" through disuse.

  Desensitization is required because the end of your residual limb andscar will probably initially be very sensitive to touch. Desensitization isaccomplished by first tapping the sensitive area lightly with the fingers ofyour other hand. If you have a bilateral amputation, you will need helpwith this. Later, you can rub the end of your residual limb lightly with atowel or wash cloth. Eventually, the sensitivity will go away.

  Exercises are necessary to regain and maintain full range of motion inyour remaining joints and to re-strengthen the muscles in the remainingpart of your amputated arm and shoulder, including the opposite shoulder,which will be used to help control your prosthesis. If you haven't alreadybeen taught the proper exercises to do, you should consult your physicaltherapist.

  Even if you don't plan to use a prosthesis, it's still a good idea to do all ofthis, because you will need to use your residual limb to help youaccomplish your daily living tasks.

Prosthetic Rehabilitation

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

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

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

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

  The chief drawback of all terminal devices is that they don't have anyfeeling. One person who wears a prosthesis part time says that using anartificial 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 satisfiedwith their prostheses. The important thing to remember is, what's rightfor you should be determined by your rehabilitation goals and the things that are important to you -- not what you think society expects you to looklike.

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

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

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

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

Care of the Residual Limb

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

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

  The inside of the prosthesis socket should also be cleaned daily, and ifprosthetic socks are worn inside the prosthesis, they should be changedand 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 arefound, call them to the attention of your doctor promptly to avoiddevelopment of more severe problems.

Work

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

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

  If you are able to return to your job after your amputation, as manypeople can, you will probably have no trouble like this. But if you are onewho sees yourself very strongly in terms of your work and you have toseek different work after your amputation, you will not be puzzled by thereaction you may have. Simply recognizing it for what it is can go a longway toward relieving the feelings.

Recreation

  Your amputation is no reason for you to give up sports or recreation. Ifyou enjoyed water-skiing, tennis, horseback riding, golf, swimming, or justthe outdoors in general before your amputation, you can certainlycontinue that involvement afterward--either with or without yourprosthesis.

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

Driving

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

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

Conclusion

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

  You will find that it's frustrating at times and will probably be hardwork. You might want to concentrate on what you have, rather than whatyou are missing. You might want to adopt the same philosophy manyother people have, that you need to use everything you've got to makeyour life as normal as possible. This means using your prostheses whenthey allow you to do things more normally, using your residual limbswhen that works better, using your feet when that's useful, and using asmany adaptive devices as you can together with all the rest to make yourlife easier. One person, who has both an above-elbow amputation and ashoulder disarticulation, calls this, "a multi-media approach." She uses allthese methods to live an amazingly normal life at home and at work. Youcan do it, too!

© Richard L. Mooney - 1994



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