Is this all new to you?
Information for new patients
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This page contains information on the following topics:
· Emotional support
· Immediately after amputation
· Phantom Limb Pain
· Wheelchair User Group
· Artificial Limbs (Prosthetics)
· Prosthetic Service
· The first stage – assessment
· The second stage – Casting
· A potential third stage – check socket
· Fourth stage – the final product
· Learning to use your prosthesis
· Follow up
· Looking after your stump
· Looking after your prosthesis
· Who’s who? – the healthcare professionals you’ll encounter
It is important to have good emotional support, both before and after your amputation. For for information on what the operation may entail, you can find helpful links here. You can give this information to those who are supporting you, so they have a better idea of what your rehabilitation experience is going to be like. When you are speaking to any healthcare professionals you may like to make a list of questions to ask them. It can also be a good idea for your support person to be with you during conversations so they take a few notes – it is easy to forget details with such a lot going on in your mind.
The Sussex Rehabilitation Centre in Brighton offer a counselling service – this is free to amputees and their family, a leaflet is sent to all new amputees and is also available at reception which gives days and times this service can be booked.
The Limbless Association runs a Volunteer Visitor service, which you can approach if you’d like to talk to someone who has gone through what you are about to. Where possible they try to match each client and Visitor by age, sex, interests and limb loss, creating a common bond and allowing the Volunteer Visitors to offer appropriate support drawing on their own valuable experience. They provide practical advice and reassurance to the person they are visiting but also to their family and friends.Visits can be arranged before and after amputation, at home or at the hospital. Don’t feel pressured into taking up this offer, but our experience shows that it can be of enormous benefit.Call the Limbless Association on 0208 788 1777 or Email: firstname.lastname@example.org
Reading books by other amputees can also be helpful. A selection of books you can borrow are available from the Information Officer at the Sussex Rehabilitation Centre`s Information Desk in Brighton. For a list of books, see `A guide to benefits and resources`. The most recently published UK book is Life and Limb by Jamie Andrew.
It will take time to get used to your new body, it is a new beginning in your life. It is normal to experience feelings of grief, which can be characterised in 5 stages:
denial, anger, bargaining, depression and acceptance
These are responses to loss that many people have, but there is not a typical response. Our grief is as individual as our lives. But you will come to accept your new body and adapt to living in the best way for you.
Immediately after amputation
A set of 3 videos called ‘Adapting to Limb Loss’ can be borrowed from Infomation Officer at the Sussex Rehabilitation Centre`s Information desk in Brighton.
You will find your stump (residual limb) is quite swollen, this is part of the natural healing process. Your stump will be bandaged and in time you will be given an elastic ‘shrinker’ sock which will help reduce the puffiness.
A physiotherapist will start a gentle exercise programme with you to make sure the muscles and joints don’t get stiff. During this time you can get about in a wheelchair or use crutches. The physiotherapist may also start some preliminary weight bearing using an early walking aid such as the Pneumatic Post Amputee Mobility (PPAM) aid.
A video called ‘Physiotherapy and Occupational Therapy’ is available from the Information Officer at the Sussex Rehabilitation Centre`s Information desk in Brighton
Phantom Limb Pain
Some people feel as if their amputated limb is still present after the operation. You may experience strange sensations, some of which can be painful. Your Consultant or doctor can give you advice on medical treatments available.
Alternative treatments some amputees use include:
· Stump massage
· Exercise (particularly swimming)
· Wearing your prosthetic limb
· Fabric stump covers - see Farabloc site
· Mirror box (reflecting the image of your sound limb)
If you are interested in reading more about phantom limb pain, you can read a book called Phantoms in the brain: probing the mysteries of the human mind. A copy is available from the Information Officer at the Sussex Rehabilitation Centre`s Information Desk in Brighton.
Artificial Limbs (Prosthetics)
The aim of an artificial limb (prosthesis or prosthetic limb) is to provide you with an aid that will help you regain mobility. The extent to which you use your artificial limb will depend on partly on your level of activity before the amputation. It will also depend on the comfort of your prosthetic limb. All artificial limbs have the same basic design. Your stump first fits into a socket to which are attached various components, such as an elbow, knee, wrist unit, shin unit, foot or hand.
A video called ‘How your prosthesis is made’ is available from the Information Desk at the Sussex Rehabilitation Centre in Brighton.
There is a team of people which makes limbs, but you will probably only have contact with a prosthetist (pronounced pros-th-tist) who will be your limb fitter. It is important that you have a confident relationship with this person, because you need to give them plenty of information about your lifestyle so they can choose the right limb for you. Their job is to ensure your socket fits well and the components are the right match to give you maximum mobility. This will vary according to your level of activity, weight, occupation etc
The first stage – assessment
You will be referred to your nearest prosthetics centre, and probably have your first appointment about 3-4 weeks after your amputation, provided your residual limb is healing well. In Sussex and parts of Surrey your nearest centre is the Sussex Rehabilitation Centre in Brighton.
A team of professionals will be involved in assessing you. They include the following: a Consultant in Rehabilitation Medicine (specialist doctor), prosthetist, physiotherapist, nurse, clinic assistant and maybe an occupational therapist. There is a list of what each of their jobs is at the end of this section called ‘Who’s Who?`
You will fill out some forms, including one about how you are feeling, and be weighed. Make sure you provide all the correct contact details so you can be reached easily.The team will make an assessment and decide if you are ready for a limb fitting. (Be patient while your limb is healing, once the cast is taken, things move very quickly.) The team will then decide which type of prosthesis is best for you depending on your lifestyle. It is important that you tell them all about the things you do – your job, your hobbies, if you wear high heels, your sporting activities, if you live in a hilly area, if you are likely to get your prosthesis wet, if you have contact with sand or dust etc. You can also discuss whether you want a cosmetic finish to your prosthesis (usually foam and stocking), so it looks like the limb you lost . Increasing numbers of people with prosthetic limbs decide not to cover the components, and happily wear shorts in warm weather because they feel they have nothing to hide, and are proud to be walking again. You can have different patterns on your socket if you choose, or natural skin tones.
After your assessment you will be given a date for your plaster casting.
The second stage - Casting
If your assessment reveals that you will be able to make good use of a prosthesis you will be given a date to be cast. This means the prosthetist will take measurements of your stump and take a plaster cast. This involves applying bandages of wet plaster of Paris to your stump, which is removed when hardened. The prosthetist may also take other measurements of your sound limb in order to gather all the information they need. The whole process could take an hour, so give yourself plenty of time.If you are being cast above the knee make sure you take a spare set of underwear when this is done, as it can be quite a messy process. Make sure you also wear clothes that provide easy access to your limb – e.g. a skirt or shorts.
Make sure you bring a pair of flat shoes to the clinic when you are cast. Give one to the prosthetist who can discuss how the heel height can affect the limb performance. It is best to try and use just one pair of flat shoes for the first few months while you are getting used to walking again.
After this second stage, you will be given a date for the next appointment – usually a couple of weeks later.
A potential third stage – check socket
This isn’t done as a matter of course. Sockets which require extra attention to fit (suction or a particularly problematic stump) will normally have a check socket made first, otherwise the definitive socket is made straight away.
The prosthetist will have made a socket (or a soft liner) from the plaster cast and a prosthesis made according to the measurements taken. The prosthetist needs to check whether it fits well before making the final socket –so this is a checking stage. If the size (or volume) of your stump has changed a lot, it may be necessary to be re-cast to get the fitting just right.
The limb may look strange at this point, but don’t worry, it is just the beginning of a process. The prosthetist will make many adjustments while you are in the fitting room (there are separate ones for men, women and children but you’ll be aware there are many other people in the same situation. This can be a time to meet other people going through the same experience as you.) For lower limb amputees it is important that the length of the limb and its movement are correct, so the prosthetist will check the position of your hip bones . This whole process can take a long time to get right. You might be given a leather sandal on your prosthetic foot which can have extra layers added to adjust the length. You will feel pressure on your stump, but if the socket does not feel comfortable, too tight or too loose, pinching or pricking you must tell your prosthetist before they make the final limb.
When the fitting is complete, you will be given a date to try out the finished product – usually 2 to 3 weeks later.
Fourth stage – the final product
Your first prosthesis may look a bit big compared to your sound limb, but this is only because your stump is still swollen and the socket is large. As you wear your limb, and over time, your stump will shrink more and more. When your limb becomes too loose, and minor adjustments make little difference to the comfort, you will need to be re-cast and a new socket made. It can take up to two years for your stump to completely settle in volume stability and strength. The prosthesis may seem very heavy too, but when you wear it this becomes less apparent. The weight of the limb you had removed is roughly:
below knee – …3 ½ - 4 lbs or 5 cans of coke
above knee - …7 – 9 lbs or 10 cans of coke
Learning to use your prosthesis
If you have upper limb loss you will have an occupational therapist working with you for a few weeks to show you how to put the prosthesis on and how to take it off. You will be given help on how to use your limb for day-to-day functions.
If you have lost a lower limb you will try out your new prosthesis between a set of parallel bars, and your prosthetist will make any further adjustments necessary. Once finished, you will be ready to practise using your prosthesis with a physiotherapist.
You will be taught how to use your new limb under careful supervision. How to put it on and how to take it off, how to stand and balance and then how to walk. You’ll do this first in parallel bars, then with a frame or walking sticks.
This process can take many weeks– it will feel strange and awkward, but this is normal. It can be frustrating and hard work, and a very emotional time too. Make sure you get support at this time and pace yourself. Remember how long it takes a child to learn to walk, from the first unsteady steps to many months of practise. On top of this, you will be getting used to the feel of the socket.
The more you wear your prosthesis, the more your stump will shrink and lose tone in the early months You will be given follow up appointments to check the fitting of the prosthesis and your personal progress several times in the first year.
Looking after your stump
The condition of the skin on your stump will have a significant effect on your level of comfort when wearing the limb. You need to keep your stump as clean as possible, checking daily for abrasion, sores, blisters and in-growing hairs. This is particularly important if you are diabetic. Seek guidance from the nurse at the Sussex Rehabilitation Centre in Brighton on how to treat your skin in the best way.
Some people find attaching sheepskin to the liner helpful in reducing soreness, but again talk to your prosthetist or the nurse first.
Depending on the type of socket you have, you may be given a supply of stump mitts or socks. These are worn next to the skin to provide some cushioning and also to absorb perspiration. These should be changed daily and washed.
Looking after your prosthesis
You should keep your socket as clean as possible – wiping the liner and/or the inside of the socket with an antiseptic solution (such as Milton’s sterilizing solution).
If your limb starts making strange noises, or is not performing as it used to, please make an appointment and see your prosthetist.
Do not try adjusting your limb yourself, this can be dangerous!
In an emergency during week days, you can telephone the Sussex Rehabilitation Centre in Brighton, and if you can make your own way, will be seen that day or certainly the following day.
Who’s who? – the healthcare professionals you’ll encounter
Ambulance care assistant (alternative: patient care services)
Ambulance care assistants transport non-emergency patients to and from hospital for pre-arranged appointments, but also have life-saving skills should an emergency occur. They help patients in and out of the ambulance and will also ensure they are settled in before leaving their home. This service is only available to patients who cannot make their own way.
A consultant is a doctor who is fully trained in a particular specialty area and has the ultimate responsibility for the clinical care of patients. Most consultants work in hospitals in multidisciplinary teams which will include nurses and other healthcare professionals as well as other doctors.
Counselling psychologists apply psychology to working collaboratively with people across a wide range of human problems, including helping people to manage difficult life events such as bereavement and past and present relationships. They also work with patients with mental health problems and disorders. They may work directly with individuals, couples or families.
Dietician (alternative: dietetic assistant)
Dieticians work autonomously within a multidisciplinary team and have their own caseload of patients. They draw up nutritional care plans for patients and advise patients about their diet, including those with particular needs such as allergies, eating disorders or diabetes.
General practitioners (GPs)
General practitioners have overall responsibility for the management of patient healthcare, including the diagnosis and treatment of health problems and referring patients for specialist treatment where necessary. They are increasingly responsible for monitoring their patients’ health on a regular basis.
Nurse (alternatives: staff nurse, registered nurse, registered practitioner)
Nurses assess patients, plan and implement their care and provide advice. Wound treatment in amputees is one of their specialities.
Occupational therapist (OT)
Occupational therapists help people who are ill, disabled or feeling the effects of ageing to live as normal lives as possible. Their work can involve giving advice on how the home or workplace environment can be modified to improve mobility and quality of life; helping people learn new ways of doing things; and adapting materials or equipment for easier use.
Orthotists provide care for people of all ages requiring a device to support or control part of their body, through providing a range of splints, braces and special footwear to aid movement, correct any deformities and relieve pain and discomfort. Orthotists work closely with doctors, physiotherapists and chiropodists.
Prosthetists work with patients of all ages who were born without a limb, or who have lost a limb as a result of an accident, amputation, or having a disease such as diabetes. They work as part of a clinical team, alongside doctors, nurses, physiotherapists and occupational therapists. Prosthetists are supported by a team of highly qualified Technicians and together they provide the best available artificial replacement limbs with the aim of enabling patients to lead as normal a life as possible.