Experiencing a Phantom limb after amputation

What is a ‘Phantom leg’?

Most amputees can still feel the leg after it has been amputated. This is called a ‘phantom limb’ and it is normal. We would encourage you to feel your phantom leg and foot, to imagine moving it and exercising it. When you imagine moving your phantom limb you will see the muscles move in your residual limb. This is helpful if you are thinking about using a prosthetic limb.

How does a phantom leg feel?

A phantom limb feels different for everyone

• It can feel normal in size, shape and sensation
• Some people only feel the toes rather than the whole limb
• It can feel itchy, achy, in a strange position, painful or cold

This experience is impacted by a variety of factors such as:

• Sensory input from the rest of your body
• Your previous experiences
• Cultural beliefs
• Your social and work environments
• Your beliefs and expectations

Why do I feel the phantom?

There is an area in your brain called the sensory Homunculus or primary sensory cortex which holds a map of every part of your body.

Areas which need more sensation (such as the hands, feet, lips and tongue) have more nerve endings and are larger on the map. This is a picture of what the map might look like:

Some parts of the body are shown as bigger than others because of the amount that we use and feel them. When your body part is amputated, the brain does not wipe clean the mental map. The information coming into this part of the brain has changed and what is felt or experienced is different too.

Things to practise with your phantom:

• Straighten your phantom leg in front of you
• Pull your toes up towards you
• Point your toes away from you
• Rotate your ankle
• If you have had an above knee amputation you can practise bending and straightening your phantom knee

Residual Limb Pain: This is often confused with phantom limb pain. Residual limb pain refers to any pain in the residual limb and should be discussed with your prosthetic team.

Treatment options for Phantom Limb Pain

Please talk to your treating team about your phantom limb pain as they will seek to:

• Help you to understand what you are feeling
• Help you to feel less threatened by your phantom
• Discuss any misunderstandings
• Help you to make changes to improve your pain

Medications

The team can ask the doctor to review your medications to try to dampen down over sensitive neurones

Prosthetic limb

The prosthetist can review the prosthetic limb’s fit to ensure that it is comfortable and fits well.

Lifestyle review

Stress, anxiety and anger can all make phantom limb pain worse. Your therapist and nurse can review your diet and give you coping strategies to help you to make changes that will be more beneficial to your overall health and wellbeing.

Brain re-training

Your therapist can guide you through a graded motor imagery programme to help your phantom limb to feel normal

What can I do to help myself?

Because the brain is always adapting and changing you, have the power to change how your brain interprets your phantom limb. It can be hard work, it takes practice and commitment but with support and guidance, you have the ability to change it.

Try to feel your phantom as a normal limb that you can relax and move as you choose. This can also help if you are using a prosthetic leg because you can feel where you are placing your prosthetic foot rather than having to look at it. You will need to be able to control when you feel your phantom as a real leg, as it can be a cause of falling at night when you are not wearing your prosthetic limb.

Everyone’s pain experience is different and we can make your treatment personal to you. It does require you to be patient, persevere, and show commitment and courage so that you can be in control of your phantom limb.

Other places to get information:

Step Up! Support group

Step Up is a support group is run by patients and staff from the Limb Fitting Centre; you can come along to any of their meetings and discuss your experiences with other amputees.

Email stepupluton@nhs.net

Or speak to any member of the team for more info.

Limbless Association

Tel: 01245 216670

E-mail: enquiries@limbless-association.org Website: www.limbless-association.org

Explain Pain is a brain-training book by David Butler and Lorimer Mosely, published by Noigroup 

The ‘Recognise’ app can be downloaded to any smart phone or tablet for a small fee. There are other free versions available. The aim is to try to discriminate between a right and left foot. You are aiming to get above 90% accuracy in 2 seconds or less. Once you are able to do this move onto seeing the images in context.

Explicit motor imagery is the next stage and involves imaging the movements with the phantom leg. This is thinking about moving without moving. Ask your therapist for help. Watching other people moving and then you imagining moving is the easiest way to start.

Mirror therapy is the last stage as it involves ‘tricking the brain’ into thinking the phantom leg is doing the movements. Research has shown it to be more successful when people can first imagine the movements.