Limb reconstruction: what you need to know

Introduction

The limb reconstruction service provides treatments for children with limb discrepancies and deformities as well as restricted growth. Many of the operations we do rely upon the use of ‘external fixation devices’. From start to finish the whole process takes many months and we hope this information may answer some of your questions and calm any fears you may have.

When you decide to have surgery a whole process of events will follow:

1. Pre-operative assessment
2. The actual surgery
3. A stay in hospital (around 5 to 7 days)
4. Daily physiotherapy
5. Frame adjustments and cleaning
6. Regular clinic reviews
7. Frame removal
8. Final rehabilitation

The process is divided into 5 stages:

1. Preparation
2. The surgery
3. The lengthening or correcting phase
4. The ‘consolidation’ Phase
5. Removal of fixator

Rehabilitation is an ongoing process and may continue for several months after the removal of the frame. The success of the process depends largely on the commitment of the family to the process.

Preparation for surgery

Diet

Children commonly lose their appetite when undergoing treatment. It is vital that fitness and healthy eating habits are maintained before the operation as well as during the 5 stages of treatment. A healthy diet will help to ensure good wound healing, growth and bone healing.

Physical

A physiotherapist may give you some stretches or exercises to begin before the operation. Optimal muscle strength and length will make the initial rehabilitation stages easier.

Smoking

It is well known that smoking seriously slows down bone healing and we strongly recommend that patients do not smoke. Others in the family should be aware that passive smoking can also affect bone healing. Trying to give up smoking before the operation will help the recovery process.

Medications

It is important we know about all medication currently being taken, including over the counter medication such as Nurofen and aspirin as well as vitamins or natural remedies. Some drugs can affect bone healing and may lead to complications.

Psychological

Open discussion about the treatment amongst family and friends is encouraged. The limb reconstruction process has many stresses and strains and these will affect everyone in the family. Supporting each other through what can be a long treatment is essential. The whole aim is that treatment disrupts your life as little as possible and treatment is largely home-based and family-centred. This means you will be largely responsible for your own care.

Home environment

At pre-operative assessment our occupational therapist will discuss your home environment. They may need to order some special temporary equipment to help you carry out your day to day tasks (for example, bath and toilet equipment). You should be able to walk around with a frame or crutches and you will be taught how to go up and down stairs before you leave hospital after your surgery.

School

It is important that you make school aware of the surgery as early as possible as some adaptations may need to be made. It is a legal entitlement that all children are able to attend school and some special arrangements may be made to help attendance. Please contact the inclusion manager at school as soon as possible. If you are not happy with the school’s arrangements your Local Education Authority can be contacted.

Clothing

Clothes may need to be modified to fit over the fixators and will need to be bigger than usual. If the frame is on the foot normal shoes can not be worn. Please be aware that the fixators can catch on clothing and can also damage bedding, soft furnishings and car seats.

Suggestions include:

• Track suit bottoms with Velcro or press-studs down the outside seam
• Underwear or boxer shorts with Velcro or ties down the seam
• Some people often find wearing skirts easier than trousers
• Family members can make a frame cover using a tube of material with elastic at each end
• Your occupational therapist will discuss specific footwear suggestions with you

The surgery

To enable the correction to take place a metal device is attached around the limb with metal pins passing through the bone. The limb correction is made by breaking the bone and doing ‘turns’ to adjust the frame.

Physiotherapy and pin site care will commence the first day after the operation. During the hospital stay the family will be encouraged to participate in your child’s care. This is to ensure everyone is confident and happy to handle the limb and frame. The limb reconstruction nurses, occupational therapist and physiotherapist will work with you to make sure you are confident with all aspects of care before discharge.

Correct positioning of the limb is vital from the recovery room onwards. Pillows should not be used under the leg, the knee should be held in a straight position and some people may require splints to encourage good positioning while resting.

External fixation surgery can involve a degree of pain and discomfort. This will be kept to a minimum with medication. For the first few days painkillers may be given into your child’s veins via a cannula, this is then followed by either tablets or medicine that can then be taken at home. Pain medication is required regularly during the early part of treatment, however once this passes it may only be needed occasionally.

Leaving hospital

Before discharge you must be able to:

• Be aware of correct positioning and use of any splints
• Clean the pins
• Transfer in and out of bed, chairs, toilet, bath and car
• Know the home exercise programme
• Walk with a frame or crutches
• Be confident with frame adjustments or ‘turns’
• Get up and down the stairs
• Be shown how to use any equipment provided for home safety

This may take up to 7 days.

Follow up appointments

As well as daily home physiotherapy exercises a therapist from your local hospital will see you regularly to monitor you and progress your exercises.

You will also be expected to attend outpatient clinic appointments at Sheffield Children’s Hospital. These will be weekly or fortnightly throughout the lengthening phase and then monthly from then on.

Managing at home

We encourage children to be as active and independent as possible while at home. This will help them to adapt to the treatment regime. On a daily basis you will be expected to perform pin site care to minimise the risk of infection, perform frame adjustments and complete physiotherapy exercises 3 times a day.

Children should walk as much as possible, limiting use of the wheelchair to long distance. A frame or crutches will be provided initially, however some children will progress to walking unaided. Every attempt should be made to keep family life as normal as possible.

Transport

Most children are able to travel in a car. A comfortable position is sitting in the front seat with the limb elevated on pillows or beanbags. It is important to maintain the leg in a straight position during all journeys. Legal requirements for seatbelts and car seats must be followed. The occupational therapist will check car transfers and seating while on the ward and advise on the safest way to travel.

School

We have found that it is better to return to full time school as soon as possible after the operation. Because of the frequency of hospital appointments some school will be missed, however every attempt should be made to keep things as normal as possible. Physiotherapy exercises and turning regimes can be completed outside of school hours.

It is expected children should be able to walk around the school, although a wheelchair may be provided for long distances if needed. Your child should be able to manage stairs but may wish to leave the class a few minutes early to avoid the rush. Many schools have lifts which can help with mobility around the school. It is helpful for children to play out at break and lunchtimes to maintain social contact with their friends.

Some children prefer to sit in their wheelchair with leg support at school but it is fine to sit in a normal chair with your leg elevated, and this will help with integration back into the classroom. Children may be able to join in with some activities in PE at school, such as balance work or skills practice but will be unable to play contact sports. Your physiotherapist will be able to advise you and school on suitable activities.

Removal of fixator

After the frame is removed a cast brace or plaster will be applied. This normally stays on for at least 6 weeks. When the cast is removed physiotherapy will be continued until you are back to full mobility and function.