This has been written with the aim of providing some general information, the emphasis is on issues of living with an amputation whether using a prosthesis or not. It is acknowledged that you might experience things differently to the way they are presented here and you are encouraged to keep talking to the health professionals who are looking after you about your own unique situation.
You may experience
Having an amputation can mean a big change in your life and it is not an isolated event. There are often things that happen before you have surgery, and many things that happen following the operation. Some of the things you may experience are:
- A period of preparation for amputation
A period immediately following surgery, including a stay in an acute or surgical hospital
Transfer to a rehabilitation centre
Ongoing wound healing
Beginning an exercise program and moving around without a prosthesis
Practising daily activities without a prosthesis
Making a decision about whether you will have a prosthesis or not
Manufacturing of an ‘interim’ prosthesis
Learning to walk using an ‘interim’ prosthesis
Practising your daily activities using a prosthesis
Discharge from rehabilitation centre
Continuing with outpatient therapy
Manufacturing of a ‘definitive’ prosthesis
Continued visits to the prosthetist, doctor and therapists
Often people ask questions like “How long will I be in hospital?” and “When will I get a prosthesis?”
Both the cause of the amputation and each individual’s abilities will impact upon the time taken for rehabilitation and the eventual outcome. The time may vary enormously between individuals. You are encouraged to talk to your rehabilitation team about your particular situation and ask them how long it might take to move through the various stages. It is quite normal that you will go through some important stages without a prosthesis before you can consider getting a prosthesis and begin to learn to walk again.
Causes of lower limb amputation: Why do people need an amputation?
There are a variety of reasons why people require an amputation. The decision to amputate is a difficult one for all the people involved. For you, your family, and the medical staff looking after you.
Lower limb amputations make up about 90% of all amputations. They are most commonly caused by peripheral vascular disease (i.e. diseased blood vessels) and/or diabetes. These diseases decrease the blood supply to the leg and quite often people experience wounds or ulcers that don’t heal, infection, and associated pain. All of these factors affect the function of the leg and make it difficult for people to walk and move around freely. The incidence of amputation related to peripheral vascular disease and diabetes is more common in older people. It is also known that smoking cigarettes over a prolonged period of time damages the small vessels in the leg thus increasing the risk of amputation.
The remaining amputations of the lower limb are generally caused by accidents, for example at work or through motor vehicle accidents, through cancer or because of life threatening infectious diseases such as meningococcal septicaemia. Sometimes the surgeons may attempt to salvage the leg or as much as possible of the leg when removing a cancerous tumour or following trauma. It may take sometime before an amputation is finally decided upon.
In addition to the above so-called ‘acquired’ amputations, there is also a group of people born with ‘congenital’ amputations or ‘limb deficiency’. The needs of this group are quite different and management starts at a very early age.
About the amputation ⇮
You are encouraged to take the opportunity to talk to your surgeon, other doctors, and the nurses and therapists involved before your amputation, and to ask them questions. This will help you gain a better understanding of what is involved with your operation, your immediate recovery, rehabilitation and some of the other issues associated with being an amputee.
Ideally a member of an amputee rehabilitation team may visit you in hospital before your surgery. You may also have the opportunity to attend an amputee clinic, to talk to the amputee rehabilitation team or someone else who has had an amputation.
Some of the things you may need to discuss with your Doctor and other staff prior to your amputation include:
- Medical issues
It is helpful to have an idea about your medical history. Sometimes your local doctor might provide this information to the surgeon. This information is helpful in providing an understanding about the events leading up to your amputation, but also about other issues that might impact upon your recovery following the amputation.
2.”What you were able to do before you started to get unwell, and how much you can do now”
Your current and previous level of function is important as it gives staff some idea about what to aim for following your amputation. You may be asked questions like “How far can you walk?” or “What were your activity levels before you became unwell?” Often people have been unable to use the affected leg for some time prior to amputation, that is being unable to walk, and have lost general fitness which needs to be regained as part of rehabilitation. Sometimes people have also needed help to be able to complete their day to day activities. It is helpful for the medical and therapy staff to have some idea about your past life, and about what you are having difficulty with now, so that they can plan for your rehabilitation following the amputation surgery. Other activities such as driving may also need to be discussed
- “How you feel”
It is important that you talk about the events surrounding your amputation and how you are feeling about the decision. This will enable the staff working with you to help you adjust to having an amputation. It is acknowledged that your past and recent experiences may affect how you deal with the amputation and it is sometimes useful to talk about some of those experiences.
What happens on the day of my amputation?
Prior to your operation, the surgeon will explain at what level s/he expects to amputate and you (or your family) will be asked to sign a “Consent Form” giving them permission to operate.
Your amputation may be performed when you are completely unconscious (under a general anaesthetic). Alternatively, you may have a spinal anaesthetic that completely removes all movement and sensation from your leg. Generally, the decision about what sort of anaesthetic you will have is made by the surgeon and the anaesthetist looking after you.
When your operation is over you will return to the ward and will need to stay in bed that day. The nurses will be checking on you regularly throughout the day. Remember that an amputation is major surgery and it will take you some time to recover fully.
After Surgery ⇮
How much pain will I experience after my amputation?
After an amputation there will be pain associated with the surgery and the wound which usually requires strong medications. Staff will be working to ensure that your pain is controlled as well as possible. You need to report to staff any pain you have in the residual limb and take the prescribed medications regularly.
How long will my wound take to heal?
Ideally the wound heals in about three weeks post-amputation and during this time the aim is to reduce the swelling and protect the residual limb prior to the fitting of a prosthesis, if appropriate. For some people the healing process takes longer than this but this time is not lost as it enables people to regain general fitness and strength and increase the range of motion of joints which may have become tight after a period of limited use.
What is phantom sensation? Why does it occur?
Phantom sensation is a feeling or movement that involves the limb which is now absent.
Phantom sensation is almost inevitable following amputation of a limb. One theory to explain this is that the brain has developed an image of the limb which is recorded and when normal messages from the limb are lost due to amputation the brain attempts to reconstruct an image of the limb, hence phantom sensation. The positive side of this is that the brain has an amazing capacity to relearn and this is greatly helped by increasing normal input, for example, moving, touching or best of all using the residual limb to enable a new image of the limb to be created.
Phantom sensation is different to phantom pain.
What is phantom pain? Why does it occur?
Phantom pain sometimes occurs in the weeks following amputation and generally resolves over time in most people. It may return on occasions, for example, when you are generally unwell or there are particular problems with their residual limb but with a concerted attempt to move and use the limb the phantom pain should settle. Some people describe the pain as an “electric shock” feeling and it can last for seconds or for a much longer time, some people never experience phantom pain.
One theory behind phantom pain is that there is a loss of normal signals to the spinal cord and nervous system which causes confusion along the nerves and is perceived by the brain as pain. Phantom pain generally resolves over time and certainly becomes tolerable in most cases. One of the best strategies to manage phantom pain is to move and touch the residual limb and, as appropriate, use medication. It is important to talk to your doctor about this as they can find the right medication for you. Medication may include drugs that stabilise the nervous system and which are also used in treating epilepsy, or anti-depressants which similarly dampen down nerve activity and have the added benefit of promoting sleep. Occasionally muscle relaxants are recommended particularly if there is a feeling of spasm associated with the phantom phenomenon. Other treatments such as transcutaneous nerve stimulation (TENS) helps to block the pain transmission and is an important local management treatment for your residual limb.
There is more information on Phantom pain on the main web site click here
or go to Amputees in Touch and click on Phantom pain in the right hand column.
Post-operative swelling: What is it?
Following surgery it is normal for your residual limb to be swollen because there is oedema (or fluid) present in the tissues. The strategy is to reduce the swelling as quickly as possible to reduce pain and help the residual limb heal by reducing pressure on the tissues. The reduction of this swelling is known as oedema management. The commencement of oedema management may vary depending on the surgeon’s orders and the viability or health of the tissues of your residual limb . The various forms of oedema management will be discussed in detail later in this booklet.
How you feel
As mentioned earlier, the decision to have an amputation is a major event in any person’s life. Ideally, if time allows, you will have the opportunity to discuss the pros and cons of having an amputation with medical and counselling staff. It is important for you to try to discuss your feelings, concerns and fears, and to gain some understanding of the process that is likely to occur after your amputation. It may also be helpful to talk to an individual who has already had an amputation such as an amputee support person, or make contact with a local amputee support group.
How might I feel initially following amputation?
Reactions to amputation differ considerably. Some factors that influence the grief adjustment process are:
The nature/cause of your amputation.
How prepared you are for the amputation – prior knowledge of what will be happening to your body and recovery process after your amputation.
Your previous coping skills – including previous lifestyle and fitness.
It is common to experience an initial period of grief or adjustment. This can be due to your obvious physical loss and the resulting change in body/self-image and lifestyle. You will also experience changes in what you can do – sometimes things take longer or need to be done a different way. Sometimes there may be things that you cannot do any more.
Your feelings during this period are individual to you and it is natural. Losing a limb has been likened to losing a close relative, and the associated feelings may be similar. Feelings that people report commonly experiencing include numbness, anger, depression, guilt, isolation, anxiety and sadness. The duration of the grieving process will vary from person to person.
You are encouraged to meet with a counsellor to discuss any concerns you have about your adjustment response. Most often counsellors are members of the rehabilitation team who have had specialised training, usually a social worker or a psychologist. Counsellors are skilled at listening actively and attentively and providing feedback and helping people deal with their varied emotions. They have strategies that may assist you greatly in adjusting to your loss of limb. It is important to access the counsellor so that your recovery is maximised and your ability to return (as much as possible) to your optimum level of independence can be achieved.. You might have had a previous support person and you may like the counsellor to liaise with them. Alternatively it may be useful to be linked in with an outside specialist who you may feel is able to assist you further. Sometimes it is also be useful to discuss your feelings with an amputee support person who has a personal understanding of some of the issues you are facing.
Will my amputation impact upon my feelings longer term?
It is not expected that you have adjusted to having an amputation after a short time in hospital or in rehabilitation. As noted earlier, having an amputation is a major life change and it impacts upon your ability to continue life as it was before, and the time taken to adjust varies between people. You may feel that you have coped really well in the initial stages following your operation, or you may decide that it would be good to have some ongoing contact with someone to talk to about your feelings.
You may also find that you seek out support when different issues arise during your life at different times. As a teenager there might be concerns about changing schools or starting to date. As a young adult there may be concerns about finding a life partner or choosing a career. You might experience different issues when you consider beginning a family or when your children start school. As you age, you might have other concerns. At any stage you might find it useful to make contact with someone to discuss your feelings and help your continued adjustment as varied issues arise.
How might others respond to me?
Amputation does not just affect one person. It is normal for immediate family and close friends to also experience grief for your loss and how it may affect you. People close to you might also experience feelings of sadness or anger. Sometimes those close to you may find it easy to talk to you about their sadness, at other times they may try to maintain a certain ‘braveness’ so as not to upset you. Children are often curious about amputation and may respond in unexpected ways. Your family and friends may benefit from having someone to talk to about how they are feeling and they could also either access the counsellor at the hospital, or ask the counsellor for a contact closer to home.
Sexual response is tied up with our self-image and self esteem. These may be challenged when someone has a chronic illness or loses a limb. Your self-image is partly dependent on being accepted and affirmed within your significant relationships. In many established relationships each person will have been involved in preparation for amputation and the support will have been significant, however following amputation you may find that your relationship with your partner changes. Your partner may want to do more to help you or sometimes your partner may be reluctant to have physical contact in case they hurt you. Sometimes they are grieving and are feeling sad that the person they love had to have an amputation. It is important to have as open communication as possible so that you can discuss your concerns and your fears together.
There may be times when you experience pain or are physically unable to assume the same sexual position that you used prior to your amputation. You may wish to seek some advice on this by asking the occupational therapist or another member of the therapy staff who you trust.
The impact of culture
Australia is a multi-cultural community and people from all ethnic groups suffer limb loss. We recognise that people from different cultures may respond differently to amputation. Your own cultural background may influence how you grieve and cope with your amputation, and how those close to you cope. Please try to explain to treating staff what your amputation means to you (culturally) so that we can better assist you. Please also inform the staff looking after you if you would like to use an interpreter and they will endeavour to arrange an appropriate interpreter. Sometimes the staff may use an interpreter when they need to give you specific information or they are trying to understand more about how your amputation is affecting your life.
Introduction to rehabilitation
Amputee rehabilitation involves not just dealing with residual limb management and fitting of an appropriate prosthesis to maximize function but also care of you as a person. The amputation needs to be considered in conjunction with any other physical, medical, social and psychological factors affecting you. The rehabilitation team will be aiming to help you manage these factors so you adapt to your amputation within the context of your life at home, at work and in the community.
Rehabilitation can be carried out in a variety of different facilities. In some regions you may have rehabilitation in the same hospital where you have your amputation, sometimes you may be transferred to a specialised rehabilitation facility, and in other regions you may be discharged home quite soon and have most of your rehabilitation as an outpatient. It is best to discuss the options with the people looking after you and they will advise you.
The rehabilitation team: Who will be the people involved in my care?
The team has members from many different professions including doctors, nurses, physiotherapists, occupational therapists, social workers, prosthetists/orthotists, nutritionists, podiatrists, diabetic educators, clinical psychologists and psychiatrists. Sometimes an amputee support person may also be a valuable part of the rehabilitation team.
The most senior doctor in the team is usually a rehabilitation consultant or another specialist. They will have undertaken specialist training in rehabilitation, including amputees, and will be responsible for all medical decisions regarding your care. Other doctors involved in your care may include a registrar or resident doctor. These doctors are qualified and are undertaking training in rehabilitation.
Sometimes it is necessary to obtain some other expert medical opinion regarding your medical management. This may be from someone such as a vascular surgeon or plastic surgeon. In this case, the doctors looking after you may refer you to a visiting consultant who might see you on site or you may need to return to the acute hospital where your amputation was performed.
Nurses work with you to help regain your independence in a safe manner whilst on the ward in the hospital. They assist people with self-care and with getting around. They monitor your health status and ensure your medications are provided. They also assist with wound healing, and in monitoring your diabetes, if applicable.
Physiotherapists help you to establish a safe way to get around upon your admission to the rehabilitation unit. They teach you how to safely transfer between the bed and a wheelchair, and may be involved in teaching you how to use a wheelchair. In some cases, they will teach people how to hop on crutches or a frame. The physiotherapist completes a full physical assessment then determines a program of exercises to improve or maintain the strength of your arms, legs and trunk and, the flexibility of your joints, and to improve your balance and fitness. They are involved in deciding the best form of oedema management for your residual limb and will teach you scar massage to improve the movement of the tissues on the residual limb . The massage and oedema management are important preparation for getting a prosthesis. Later, the physiotherapist will be intensively involved in teaching you how to use a prosthesis and regain your independence with walking. This process will be covered in detail in later sections.
The occupational therapists work with you to help you regain independence with personal care, e.g. bathing, dressing, grooming. They ensure that you can safely transfer in the bathroom, for example, from toilet or shower chair. They are involved in teaching you how to use a wheelchair and assist you in other tasks such as driving, returning to work and returning to leisure pursuits.
Occupational therapists conduct an assessment of your home and advise you of any modifications or specialized equipment you may need to be safe and independent at home. Later, if you are walking on a prosthesis, they help you to practise many day-to-day tasks using the prosthesis to ensure you are independent and that you can return to the things you did before your amputation.
As part of the rehabilitation team the prosthetist is involved in the assessment and decision-making process that determines whether a prosthesis will be safe and useful to you. If so, the prosthetist will be involved in advising on the type of prosthesis that is most appropriate for you. The prosthesis will be designed to meet your functional and cosmetic requirements and provide maximum stability and safety while walking. The majority of artificial limbs provided to people in Australia are funded by the ‘Artificial Limb Program’ or by an insurance company. Your prosthetist can advise you further about the funding sources that apply to you. They can also provide advice about new developments in the area of prosthetics.
Once your prosthesis has been manufactured your prosthetist will show you how to use and look after it. Following your discharge from hospital your prosthetist will also be responsible for the ongoing maintenance and repair of your prosthesis so you will need to return to your prosthetic centre regularly.
The social worker is a team member available to offer you, and your family and friends, confidential assistance in planning towards and coping with your amputation, both on an emotional (psychological) and practical level.
The social worker will discuss with you typical grief and adjustment issues to assist you to cope with possible lifestyle/body image changes. They will be available to help you throughout your hospital stay and during your adjustment period after discharge.
The social worker is a trained counsellor so please try to voice your concerns so that you can maximise your recovery following amputation. The counselling process is not aimed at telling you what to do but rather is dedicated to enabling you to clarify lifestyle options so that you can then make informed decisions.
The social worker is also available as an advocate if you have any concerns about your treatment program. An interpreter can be employed if you find it easier to communicate in your own language.
In some centres there are people who have specialised training in teaching you how to monitor your blood sugar levels and how to administer any medications you may need to treat your diabetes.
When a diabetic educator is not available, the nursing staff and medical staff will teach you these skills.
Medical illnesses such as stroke, diabetes and heart disease can cause alterations in memory, concentration and other aspects of thinking. Stress can also affect thinking abilities. A neuropsychological assessment may be suggested if you, your family or the treating staff feel concerned about any of these aspects. Feedback from the neuropsychologist would then be used to help you maximise your ability to benefit from rehabilitation.
After the amputation: the structure of the residual limb
Your lower limb is changed by the amputation and these changes are best understood by knowing about the structure of the residual limb. This will help you to understand and communicate effectively with the people looking after you about your amputation and issues of healing, pain and the fitting of a prosthesis.
It is helpful to look at the limb tissues in layers – starting from the skin and moving inward.
The skin layer must heal following amputation. The aim of surgery, if possible, is for the skin to heal by ‘primary intention’, that is where the tissues grow straight back together. Sometimes this is not possible. In some cases, healing may need to occur by what is referred to as ‘secondary intention’ if the tissues of the wound come apart or become infected. This process takes somewhat longer. It may even be appropriate for a break from hospital and rehabilitation to allow the skin to heal fully and be able to take load before an interim prosthesis is fitted.
The skin has many small nerves supplying it, which are cut during the amputation and there may be a period of lack of feeling and then some tingling as the nerves recover. Increased sensitivity may also be experienced for a period. All this should settle, as the prosthesis is worn more.
The next layer is the subcutaneous layer, which is essentially fatty tissue and muscle.
The muscle flap is vital as it provides a pressure-tolerant cushion to cover bone ends. Surgical techniques, such as the ‘posterior flap’, where the calf muscles are bought around to the front of a below-knee amputation residual limb, have helped to make the fitting of prostheses more comfortable and effective. Over time muscle tends to atrophy (or waste) because it is not being used in the same way as previously. This is one of the reasons that the volume of your residual limb decreases over the first year or two following amputation.
The bone obviously needs to be cut during amputation and for this reason it is quite sensitive initially. This settles down if it is well protected by the subcutaneous tissues mentioned. Occasionally, particularly in younger people, there may be excessive bone growth where the bone has been cut. This is generally not a problem and can usually be accommodated by appropriate changes to the prosthesis.
The prosthesis must replace length. Using biomechanical principles the prosthesis also allows replication of normal motion, which ordinarily the muscles would have controlled.
The lost joints are replaced in the prosthesis. Sometimes the prosthesis will have joints which allow movement, for example a knee joint. In other cases the loss of the joints (eg. ankle and foot) is compensated for in the design of the prosthetic foot.
Nerves are cut at the time of amputation and these nerves will attempt to re-grow. For this reason every nerve will develop a ‘neuroma’. A neuroma is a bulbous swelling on the nerve ending. This is usually not a problem unless it is pressed on by outside pressure. Pressure on a neuroma can cause local pain or phantom pain. This is usually overcome through the design of the socket and by adjusting the socket. As well as the larger deep nerves there are smaller nerves supplying the skin, as mentioned. These tend to recover as the skin heals.
The blood supply to the residual limb is critical particularly as a lot of amputations are done because of inadequate blood supply to a limb. This is why surgeons very carefully select the level of amputation so that there is good blood supply to ensure healing. In some cases when the situation is not clear it may be appropriate to attempt an amputation at below-knee level in the hope of a better functional outcome.
The oedema forming within the residual limb is very common, as one would expect, after an operation of any type, and it is vital to control this swelling as it will improve the healing of the residual limb and allow fitting of an interim prosthesis.
Oedema management: What are the different forms?
When the wound is adequately healed the therapy staff will introduce oedema management to help reduce the amount of swelling in the residual limb. Reduction of the swelling helps reduce pressure on the tissues which can aid healing and reduce pain.
The staff may commence bandaging your stump or initiate the use of a specialised compression sock, known as a shrinker.
“Stump bandaging” is a specific skill that you will be taught by the therapy staff so that you can apply your own bandages. It should be maintained 24 hours a day if tolerable.
Alternatively, a shrinker sock may be provided following careful measurement of the residual limb. You would be expected to pull the shrinker on and off by yourself. You should not apply the bandage and a shrinker together.
In some cases a rigid dressing may be made for below-knee amputees, this will probably be manufactured by a prosthetist/orthotist. A rigid dressing must be worn with a sock underneath and as the size of your residual limb reduces you will need to add more socks. You might be expected to apply your own socks and rigid dressings following explanation and demonstration by staff.
You will also be encouraged to elevate your residual limb and a stump board will be provided for use with the wheelchair whenever possible. Oedema tends to “pool” with gravity and therefore is most likely to cause the end of your residual limb to swell. Elevation assists in preventing excess swelling.
It is also important to actively exercise your residual limb to work the muscles. The action of the muscles helps to stimulate blood flow in and out of the tissues thereby assisting reduction of oedema and aiding healing.
Should I touch my residual limb?
After the surgery your residual limb can become quite sensitive to touch. Obviously whilst your wound is still healing and there are stitches you should not touch the wound. The nurses will monitor and dress the wound regularly using sterile techniques. You should not interfere with these dressings.
It is important that you begin to touch the intact skin early on and the therapy staff will teach you appropriate touching and massage for your residual limb once it is sufficiently healed. Initially you may start by touching the intact skin with your hands, perhaps rubbing cream into the skin. You may then be encouraged to rub the skin with smooth fabrics and slowly work up to rougher textures, such as a towel, to help desensitise your stump. Even drying your residual limb after showering or bathing will help to decrease the sensitivity.
Can I touch the scar?
After your residual limb wound has healed, the therapy staff will assess the available movement of the suture line (or scar) in relation to surrounding skin and other tissues. Sometimes scar tissue forms between the skin and the underlying deep tissues, e.g. bone. This is known as an “adherent area of scar”. It is important to have movement of the scar, if possible, so you may need to massage the adherent areas to improve mobility of the skin.
The therapy staff will teach you how to do appropriate scar massage. It is important that you touch your residual limb and massage the skin as taught, several times a day. Doing these things will aid in preparing the residual limb for wearing a prosthesis.
What is a joint contracture and how could it affect my rehabilitation?
With amputation, a balance between muscles crossing the nearby joint is lost. A joint contracture may develop because some structures around the joint shorten and tighten so that the joint is no longer able to move through its full range. Once a contracture has developed it is extremely difficult to stretch the joint tissues and regain full range. Preventing this through regular stretching and positioning is vital.
Even when you have a prosthesis it is still necessary for you to continue your stretches. This is particularly important if you spend a lot of time sitting down. You want to keep the joints supple and allow them to move through their full range.
If you have a transtibial amputation it is extremely important that you maintain the movement of your knee and the length of the hamstring muscles. The hamstring muscles are the large muscle group on the back of your thigh that cross the back of your knee. There is a risk of these muscles and all the tissues at the back of the knee shortening and tightening after this level of amputation, this is known as a “knee flexion contracture”. If you do not maintain the range of movement at your knee following an amputation your chances of walking with a prosthesis can be jeopardised. Your physiotherapist or occupational therapist may provide you with a board to use on your wheelchair, to encourage you to maintain the knee in a straightened position.
Your physiotherapist will demonstrate stretches and correct positioning of your knee and advise you on these matters.
What about the rest of my body? ⇮
You may be asked questions about a number of areas of the body, particularly as the ability to compensate for the loss of a limb in amputation depends on other systems taking up the challenge and working differently. For example, the remaining lower limb may need to take more load. This has implications for the joints of that limb but also for the joints of the lower back.
General health and physical condition is important and is required for good progress in rehabilitation. The brain needs to relearn ways of doings things to make up the loss through amputation. The ability to feel what is going on through your sensory system is important. At the level of your residual limb, skin sensation gives feedback about what is happening within the residual limb whilst wearing a prosthesis. The joints provide proprioceptive feedback or a sense of where the limb is positioned. The special senses such as vision, hearing and balance are also important in allowing a person to move and feel the prosthesis appropriately.
The function of the heart and lungs directly affect the exercise capacity of a person. With amputation there is an increased demand for energy. An important part of the rehabilitation program is to build up general fitness. This is particularly important if you have been off your feet for sometime and not walked.
The upper limbs are important for pushing the body upwards to assist with transfers and with the use of gait aids, such as crutches, or propelling a wheelchair. Care must be taken to strengthen the use of the upper limbs appropriately and avoid undue strain.
The low back (lumbar spine) needs to work differently to help push the prosthesis forward and maintain balance. This is particularly an issue with higher level amputation, eg. above the knee.
Body weight is reduced by the amputation. The replacement prosthesis is lighter than the lost limb. The weight of a prosthesis is felt to be even lighter if it fits and functions well.
General body weight may increase after amputation because people are less active. Increased body weight can be an issue. It makes it difficult to maintain the fit of the prosthetic socket because the residual limb is changing in size. There may be increased load on other body structures that are already trying to compensate losses associated with the amputation.
If one limb is amputated the rest of the body, particularly other limbs, need to compensate.
The loads on the remaining limb may cause it to become tired and/or develop what is sometimes called ‘overuse’.
Balancing the body by wearing a prosthesis helps the posture and spreads the load between the limbs and reduces overuse. Management of overuse is to carry out appropriate activities that are non-aggravating. The rehabilitation team can help monitor this and provide education about these activities.
The body will behave differently following an amputation, and issues such as other medical conditions you may have need to be taken into account. For example, some amputees with heart problems may feel quite fatigued by the rehabilitation process and it should be recognized that increased energy is used for walking when wearing a prosthesis. It is worth remembering that your stamina improves markedly because general fitness gradually returns with rehabilitation.
Other problems, such as arthritis, also need to be considered when selecting the type and level of rehabilitation program, and the type of prosthesis to ensure that it minimizes stress on joints and the rest of the body.
One of the best ways to maintain overall fitness of the heart and lungs is to walk. Immediately following an amputation you are unable to do this and you must use different ways of getting around. You may be supplied with a wheelchair or you may be taught to hop with a frame or crutches. Hopping will involve much greater effort than walking and you may tire quickly and find yourself out of breath.
Using a wheelchair requires much less effort than walking, although you are using your arms to push and they may tire quite quickly at first. Early on when you are not walking, pushing the wheelchair yourself or hopping are activities that will aid in maintaining your general fitness. For example, you may be encouraged to propel yourself to and from therapy each day to aid your general fitness. These activities are also using the muscles of the arms and legs, helping to strengthen them.
When your activity levels change you may find that you also gain weight. Excessive weight gain can contribute to long term ill health and problems with maintaining a good fit of your prosthesis therefore it is important to try and keep at a stable weight. Maintaining some level of aerobic activity is helpful in preventing excessive weight gain. Swimming has been identified as a good aerobic activity and is worth discussing with your physiotherapist.
Strength and flexibility of limbs
Following an amputation it is important to maintain the movement and strength of all your joints and muscles. The physiotherapist will assess the range of movement of your joints and the strength of your muscles. Many people are tight or weak in particular muscles or stiff in particular joints. Your physiotherapist will teach you specific exercises for these areas of concern. You will also need to regularly exercise to maintain the muscles in the legs and to help prevent the development of a joint contracture. It is likely you will be asked to attend therapy once or twice daily to participate in an exercise program.
If you have had an above-knee amputation, or even higher such as a hip disarticulation or hemipelvectomy, your sitting balance will be affected.
The higher the amputation, the less area you have to sit on and distribute your weight through, you may hear this referred to as having a ‘smaller base of support’. You may find that sitting for prolonged periods becomes uncomfortable. Some people require specialised cushions or seating to ensure they are comfortable and have good posture when sitting in a wheelchair or chair.
Your physiotherapist may instigate activities in sitting to help improve your sitting balance, if appropriate.
After the amputation your balance will be significantly affected. The shape of your body has now altered and you have a much narrower base of support. It is important that you re-adjust your balance and that you are able to stand on the remaining leg if possible. Your physiotherapist will assess your balance and ability to stand on one leg. They may instigate activities or exercises in standing to help improve your ability to stand without holding on, or to improve the time you are able to remain standing.
Care of your other leg
The remaining limb needs to be carefully looked after, for example, by using appropriate footwear particularly if it has also been affected by the disease process which caused the amputation, such as vascular disease or diabetes.
With good care of the remaining limb, particularly the foot, the risk of further amputation can be minimized. You should check the skin on your remaining leg regularly. If you notice any sores or areas of broken skin you should consult your doctor to ensure you receive appropriate attention.
Regular Podiatry appointments are also recommended for cutting toe nails and to help maintain a healthy foot.
Getting around ⇮
Getting around: Moving around in bed and getting out of bed
When you first meet the rehabilitation staff they will want to assess how much you can move by yourself. They may start by assessing how you move around in bed. For example, they may ask you to roll from side to side and move up and down the bed to see if you are able to do these activities independently. Next they will need to see whether you can independently sit up over the edge of a bed from a lying position. If you are unable to do these tasks you may need some practice and these tasks will be incorporated into your daily physiotherapy program of exercise. Some special equipment may also help you.
Moving from one place to another is often referred to as “transferring”. Transferring out of the bed into a wheelchair or regular chair and back again is very important. If you have one leg amputated you may be taught how to do a low standing pivot transfer. You should always wear a slipper or a shoe when transferring, this will help protect your other foot. If you have both legs amputated you will need to use a forwards/backwards bottom shuffle or a sideways transfer. Sometimes with the sideways transfer, a slideboard is also helpful. Usually the physiotherapist will decide which is the most appropriate transfer and what equipment you need and they will teach you. Other staff members such as the nurses and the occupational therapist will also be assisting you with transfers and ensuring you are safe.
Getting around: Using a wheelchair
If you are provided with a wheelchair for your non-prosthetic mobility you will be taught the safety features first. You must know how to put the brakes on and off and move footplates and stump boards, if applicable. It is very important that you learn the features of your wheelchair well. You will also be taught how to propel the wheelchair with your arms and how to turn corners and manoeuvre in tight spaces.
Getting around: In the toilet and bathroom
Getting on and off the toilet is another activity that the therapy staff will assess. Staff are aware that being able to get to the toilet independently is very important to most people. In most hospital situations rails are located beside toilets and these can be used to assist you in moving from your wheelchair to the toilet safely. To begin with it is helpful to be able to position your wheelchair at a 900 angle to the toilet and do a low pivot transfer if you have one leg amputated. This way there is a minimum amount of distance to travel.
If you have both legs amputated then to begin with you may continue to use the frontward/backward transfer method and sit on the toilet facing the cistern. Alternatively you may position your wheelchair so that you can transfer sideways on to the toilet.
Shower transfers are another task that will be assessed and you may be given some assistance with. Safety is of paramount importance when transferring in the shower as this area is often wet and slippery. Ideally the shower base should be level with the floor to allow ease of transfers. You may use a shower chair or stool, and if there are grab rails in the shower, you can use these to assist with a low pivot transfer. Alternatively you may use a wheeled shower commode initially to get to the shower.
If you don’t have a shower recess at home, only a bath, then there is equipment available to assist you to sit over the bath and have your shower. Some people who have had both legs amputated find this the safest and easiest method long-term.
You will need to practice these transfers with a variety of staff members while you are in hospital and they can advise you about the equipment you might need, and the methods you might use once you return to your home.
Getting around: In and out of the car
Getting in and out of the car is much the same as getting from your bed onto your wheelchair. When you begin you may find it easier to practice in the front passenger seat as this allows you the maximum room.
You should position your wheelchair as close as possible to the side of the car after you have taken off the footplates.
If you have one leg amputated then you should line up the front of your wheelchair with the back of the car seat. Then you can do a low pivot transfer with one hand on the arm of your wheelchair and one hand on the car seat.
If you have had both legs amputated then you should line up your wheelchair with the car seat and use a slideboard to move sideways in and out of the car. Always put your hand on the slideboard so it doesn’t slip out of place.
Managing your daily activities
One of the key goals of rehabilitation is to assist you to carry out the activities that you want or need to be able to do to the best of your ability. Activities will include tasks that you may need to do at home, at work at school or university, or in other community settings. It is important that you can return to being as independent as possible at home but also within the community, e.g. shopping, visiting friends, attending church, playing bowls. Initially this may involve learning to carry out these activities from a wheelchair and later on may involve a trial of these and other activities using your prosthesis.
Following your amputation you will be encouraged to return to daily living activities as you are able. This may begin quite soon after the amputation in the acute hospital setting when you begin to complete some of your self-care activities (e.g. showering and dressing) with some help from the nursing staff. It will then continue as you begin to try some of the activities that you used to do before you had your amputation. This may include such things as cooking meals, completing housework, driving, gardening and returning to leisure activities-all the things that contribute to having a full and meaningful life.
Your occupational therapist will know of many different techniques and pieces of equipment that will help you to maximise your independence. Some equipment may be useful in the early stages while you are still getting stronger but you may not need it longer term. Sometimes when you leave hospital and you can find that you would benefit from a certain piece of equipment. You are advised to discuss these issues with your occupational therapist and to talk to them about what you hope to be able to do in the house.
Home alteration’s ⇮
Will I need to alter my house? Will I need to move house?
As one of the primary goals of the people looking after you is to help you to return home to a safe and independent lifestyle it is important that you discuss where your daily activities take place. While you are in hospital you may be asked questions about your home. The sorts of things you may be asked are:
Which entrance do you go in and out of?
How many steps do you have?
Is everything inside on the same level?
Do you have a shower or a bath?
Have you already got any equipment at home?
It is common for a member of your treating team (usually an occupational therapist) to arrange to visit your home soon after your admission to rehabilitation. They may take you with them if practical, but on some occasions they may not be able to e.g. if there are many stairs to your door. If you are unable to attend, then it is useful to have a family member or close friend there to help show the occupational therapist your home and help to give you information about the visit.
Following the visit, the occupational therapist will discuss their recommendations with you, and together you will make a plan for any equipment or changes which may be needed at home. The occupational therapist will make recommendations based on helping you to maximise your independence, ensuring you are safe at home, considering how you will manage activities independently as you get older, and financial issues. There may be some financial assistance available and you are encouraged to ask your occupational therapist or social worker about information regarding this if you are unsure.
Recommendations may include such things as:
Having a chair in the shower, or seat over the bath to assist you to shower independently.
Having a ramp built to enable you to get in/out of your home in the times when you need to use a wheelchair.
Putting rails beside the toilet to assist you to get up/down from the toilet.
Moving frequently used crockery to cupboards where you can reach it easily.
Having an extra phone point installed by the bed.
It is not only your home environment which needs to be considered but the other places you spend time should also be brought to the attention of your occupational therapist, e.g. homes of family or friends, the local shopping centre, the library or bowling club, church or school.
Some of these places may already be accessible for individuals who have had changes to their mobility. Some may present difficulties. Your occupational therapist may be able to recommend some strategies to assist in accessing these places.
Will I be able to continue driving?
Driving is a significant activity allowing independence and freedom. For some people it is an activity that does not appear to require much skill and can almost be done automatically. It is actually highly skilled and demanding-both physically and mentally.
Many people with an amputation continue to drive following their operation. In some cases individuals are advised not to drive due to age-related changes, problems with vision associated with diabetes or pain that may affect concentration. Some of these factors may improve following medical intervention and you may be able to resume driving at a later stage.
The doctor looking after you will be able to advise you when it is safe for you to return to driving. Following your amputation the licensing authority for your state, and your car insurance company, should be notified. In some Australian States a driving assessment is required. This assessment is conducted by an occupational therapist with specific training and skills in assessing the many and varied demands of driving. The assessment may include checking your reaction time, an eye test; an assessment of road knowledge, and a driving component.
In some circumstances there may be certain recommendations made (following your amputation) for example:
You may need to have modifications to your vehicle
You may be licensed to drive an automatic vehicle only
You may be limited in the times of day that you drive or within a certain distance of your home.
You are encouraged to talk to your occupational therapist about issues associated with driving and they will advise you about the process and timing relevant for you to return to driving. You may also wish to talk to your occupational therapist about strategies to assist with transferring in and out of the car, loading and unloading the wheelchair from your car, parking permits, and public transport considerations.
Will I be able to return to my work and leisure activities?
Often individuals find that their health condition or the amputation has forced them to have a break from their work or leisure pursuits or, perhaps they have stopped them all together. If you have had an active life prior to your amputation then you may find this frustrating. After your amputation you may need a period of time to recover physically, but part of your return to ‘normal life’ is also to return to your work or leisure activities. The therapy staff taking care of you may ask you questions about your work activities (whether paid or unpaid; inside or outside the home) and about the activities you do to relax or enjoy yourself. This will help the therapists to work with you in constructing a plan for your rehabilitation that will be relevant to your daily activities.
When it is appropriate for you to return to work, therapy staff might arrange to have a meeting with you and your employer, and they might arrange to do a work assessment with you. Sometimes they may refer you to another agency whose job it is to specifically help you with work issues. They will need to consider with you:
The demands of the job-both physically (e.g. balance; energy requirements, etc.) and mentally (e.g. concentration, planning, etc.).
Whether some aspects of your work or the work environment can or need to be modified.
Travel to and from work.
Whether you can build up your work hours over a period of time if you need to begin in a part-time capacity.
You may not work in paid employment. It may be that you are involved in volunteer work; working with your family; or doing the household work in your own home. Some of these activities may also require some modifying following rehabilitation or it may be helpful to talk to the occupational therapy staff or other staff about how you might return to these activities independently and effectively during your rehabilitation.
It is important to have a balance in your life between the things you have to do and the things you want to be able to do. Returning to your leisure activities and hobbies are important parts in your rehabilitation as well as being able to look after yourself or return to work
Some of your leisure activities may be active and require physical skill, some may be more passive activities. Sometimes talking to the therapy staff about the hobbies that you enjoy, and the places that you carry out various activities will enable them to assist you to return to these activities or to pursue new hobbies and activities.
Many public facilities will be accessible for people with reduced mobility or specific mobility requirements. Some venues, e.g. theatres, cinemas, sporting facilities, etc. may assist with special seating requirements. Some venues may have a hire or loan system for wheelchairs or provide specially located disabled parking facilities. If you are attending a venue for the first time it is worthwhile ringing in advance to ensure that they can meet your individual needs.
Consideration should be given to holidays as there are specific issues when planning to travel away from home. You may need to think about issues such as arranging accommodation that is wheelchair accessible or has appropriate equipment; considering the sort of transport you might use during your holiday; or the location of a local prosthetic facility near your holiday destination. These things should not stop you going on holidays but some pre-planning will ensure that you enjoy your break with a minimum amount of fuss.
Will there be other issues as I get older?
An amputee goes through phases of life and it is important that there be regular specialised clinic reviews, not just focussing on your amputation but your whole body and other relevant issues. Needs change over time and other issues may become important, for example, managing with arthritis, increase in body weight or loss of general fitness, all of which may be associated with aging, but not necessarily.
In reality it becomes more difficult to compensate for amputation as one gets older. The aim is to keep walking. By paying attention to good health management and dealing with some of the issues mentioned mobility can often be maintained. At times, it may be necessary to fall back to wheelchair use, for example, over longer distances.
Sometimes people make a pragmatic decision that it is easier to use the prosthesis over shorter distances. At higher levels of amputation and with other medical problems a decision not to wear prosthesis at all, and use a wheelchair as the main form of mobility is reasonable.
However, it is still necessary for an amputee be reviewed by a specialised clinic team, not just in relation to the prosthesis, but for all other aspects of being an amputee.