COPING WITH A LEG 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, inside you're the same person nowthat you were before you lost your leg.
Leg amputations are called by different names. Above-knee and below-knee amputations are named after the bones they transect, namely"trans-femoral" and "trans-tibial" respectively. They are also commonlyreferred to as "AK" and "BK." 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 your leg you have left is commonly called a "residual limb,"although some people use the term "stump." You can use either term youprefer.
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 severe (i.e.,higher) your amputation is, if your amputations are bilateral, and if youmust rely on others for help with your daily living needs. Also, the shocktends to be more severe if your amputation was the result of an accidentand you didn't have time to prepare emotionally, or if you expect your lifeto be profoundly 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. Only if these feelings persist, dosome professionals advocate seeking psychological help.
Not only are there physical challenges and doubts about the future to bedealt with, but since most of us tend to equate who we are with beingphysically "complete," we may see the loss of our limb as striking at ourvery self-image and identity. A positive self-image and an understandingthat your attractiveness to others is based on your personality, intellect,sense of humor, and personal values--not how many legs you have--will bethe most significant factor in your emotional recovery!
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.
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 yourselftrying to take a step with your missing foot.
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 foot 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.
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 lastlonger. It is more likely to occur if your leg was painfully diseased or badlyinjured 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 3carry 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,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 andtry the simple treatments that have worked for them. Then consult yourphysician if none of those relieves your discomfort.
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 a leg amputation -- and even harder after two ofthem. 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 accepthelp, 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 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.
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 "prosthetic shrinker," which is a tubular elasticsock which is pulled or rolled onto the residual limb. You may have beentaught in the hospital to wrap your residual limb with an elastic bandageusing a "figure eight" motion and to make it tighter on the end than at thetop. If you were not taught this, you will want to ask your physicaltherapist or prosthetist to teach you, because if you don't wrap itcorrectly, you can cut off the circulation, doing more harm than good.Eventually, this wrap will shrink and shape the residual limb's muscles so aprosthesis can be used.
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. Later, you can rub the end of your residual limb lightlywith a towel 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 leg. Exercises to strengthen your arms andshoulders are also important, since you will have to rely on those musclesto use crutches and sometimes to transfer from one surface to another, Ifyou haven't already been taught the proper exercises to do, you shouldconsult your physical therapist.
"Prosthetic rehabilitation" means resuming a normal life through the useof a prosthesis.
You may have been fitted with an Immediate Postoperative Prosthesis(IPOP) when you were still in the hospital. Sometimes a physician willdecide to cover your residual limb with a plaster cast instead of a softbandage before you leave the operating room. (This is commonly done tomanage expected postoperative swelling.) After a few days, the physicianmay decide to attach a metal post and a foot to the cast and "get you onyour feet" using this IPOP.
At any rate, after returning home for a suitable period of healing andresidual limb preparation (see above) you will be ready for a "real"prosthesis.
The first step in this process is the development of your prostheticprescription. 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 physiciansabout what kind of prosthesis will be best for you. The important point toremember about prosthetic prescriptions is that you must explain fully toyour physician and prosthetist exactly what level of activity you expect toreturn 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 andfully expect to be able to resume your former level of activity, a "basic" legwill not serve you well.
The first step in making your prosthesis will be to take measurements ofyour residual limb. Then, a mold of your residual limb will be taken byplacing a plaster cast on it, carefully removing and reassembling the castafter it has hardened, and filling it with plaster. When that has hardened,the cast will be peeled away, leaving a plaster duplicate of your residuallimb 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, andsuch are available on the market might be called a science, but making asocket is an art. The reason is that every residual limb is different andyour socket must be custom made to fit you specifically. Also, since anartificial leg must bear your entire weight and still feel as comfortable aspossible, it must fit exactly, supporting your weight where it should andavoiding 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 beindicated in your prescription.
Your prosthetist will probably make your first socket out of clear plasticso the way it fits can be seen through the clear socket wall. If the shapeisn't exactly right, the prosthetist can make the necessary changes by re-heating and bending the plastic appropriately. When a proper fit has beenachieved, a "temporary" prosthesis may be made. This is because yourresidual limb will continue to change shape and size for several more weeksor months. At the appropriate time, a "definitive" prosthesis will beconstructed for you. A cosmetic covering--a piece of foam carefully carvedto match the shape of your other leg--is usually provided. This is theprosthesis you will use every day until it wears out or otherwise needs tobe replaced.
The importance of training in how to use the prosthesis cannot beoveremphasized. Your prosthesis is a tool, and like any tool, it won't dowhat it's designed to do unless it's used correctly. You will want to insist onreceiving adequate training either from your prosthetist or physicaltherapist--or both.
Also, you will want to watch your weight carefully. If you gain toomuch, your prosthesis may no longer fit--and buying a new, expensiveprosthesis is a very different proposition than buying new clothing!
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. Therefore,learning how to care for your residual limb is an important part of yourrehabilitation.
If you wear a prosthesis there may be special problems, such as rubbingor irritation caused by perspiration or swelling inside the socket. Usuallythese 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, promptly call them to the attention of your doctor so as to avoiddeveloping more severe problems.
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.
Your amputation is no reason for you to give up sports or recreation. Ifyou enjoyed snow or water-skiing, tennis, horseback riding, golf,swimming, or just the outdoors in general before your amputation, youcan certainly continue that involvement afterward--either with or withoutyour prosthesis.
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.
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 andan automatic transmission, you won't need modifications. If your right legwas amputated and you're not comfortable operating the accelerator withyour left foot, an extension pedal can be installed so the accelerator can beoperated from the left side. In general, most prosthesis users with below-knee amputations, even bilateral amputations, can operate a manualtransmission without modifications.
For those who have bilateral amputations and are not prosthesis usersor those who are simply uncomfortable operating the pedals with theirprosthetic feet, a wide variety of hand controls are available.
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.
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 dealing with crutches, wheelchairs, and artificial limbsis frustrating at times and it will probably be harder to do the things youdid easily before. But if you concentrate on what you have, rather thanwhat you are missing, your life will return to a level of "normalcy" thatmay surprise you.
© Richard L. Mooney, MAAF