What are external fixator frames?
Also known as Ilizarov frames, distraction frames, external frames or spatial frames, these all work in a similar way. They are circular frames placed around the limb and attached to metal pins which are inserted through the bone. They were devised and first used by a Siberian surgeon, Gavril Ilizarov, and were in use in Russia for many years, but have only been used in the UK since the early 1990s.
What are they used for?
They are used to lengthen and/or thicken bone and to correct deformity such as clubfoot by altering the position of bones and soft tissue. Frames are also used to repair fractures, especially ‘non-union’ fractures where the fractured bone doesn’t meet.
This leaflet concentrates on the use of frames to lengthen limbs and correct clubfoot.
How do they work?
These frames take advantage of the bone’s ability to regenerate itself after a break (osteogenesis). A break is made in the bone(s) and, while supported by the frame, the limb is gently stretched or moved to a different position
The bone is cut around the outside, leaving the central core containing the marrow intact. This is known as a corticotomy. A series of metal circular rings are placed around the area to be treated. The rings are attached to the bone at intervals by wires. The rings are connected to each other by rods which contain screws or nuts. By adjusting the screws a small amount each day, the rings are gradually moved apart from each other for lengthening or in a certain direction for correction of the angle of growth.
Frames are built especially for each individual patient. They weigh about 3kg (7lb).
What happens during the operation?
The surgery will take place under general anaesthetic and may take several hours. The rings are placed around the leg or foot and attached to the leg with wires through small incisions. The surgeon will then make a larger incision in order to get access to the bone(s) which need to be cut in order for the lengthening/correction process to start.
Will it hurt?
Well, yes – certainly at the beginning, and some level of pain or discomfort will possibly continue throughout the treatment. Like any surgical procedure, a certain amount of pain and discomfort is to be expected and it would be unwise and unfair to make false promises to your child that it won’t hurt at all. However, pain relief will be administered, possibly by epidural in the first instance, and should keep the pain at a manageable level. You should discuss pain management with your child’s care team before he or she is discharged from hospital and make sure you understand how to administer any medication prescribed for them.
How long will the treatment last?
Lengthening happens at the rate of approximately 1cm per month in most cases. The frame then has to remain in place until the new bone is strong enough to allow the frame to be removed.
What happens during treatment?
About a week to ten days after the operation to fit the frame, the distraction process will begin. You will be shown how to turn the screws in a particular order and for a very precise amount at least once each day, depending on the particular needs of your child.
Your child will be x-rayed at regular intervals to check how well the procedure is working. The amount and regularity of screw turning may be changed after these x-rays if the lengthening/correction is happening either too quickly or too slowly.
Daily physiotherapy is very important in order to stretch the muscles and other tissues to keep up with the bones as they lengthen and/or change position. Physiotherapy also keeps the joints mobile. Your child may be encouraged to weight-bear while the frame is in place to help strengthen the new bone.
Physiotherapy is one of the most important aspects of your child’s treatment and is essential if the treatment is to be successful.
The main aims of physiotherapy are
· To prevent complications such as joint stiffness and loss of movement.
· To reduce pain and swelling
· To achieve and maintain maximum mobility.
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The physio will also make sure that your child is walking properly and taking sufficient weight through the leg being treated. During certain types of treatment the fixator will be on longer if your child does not walk properly. Your child’s physio will discuss their individual needs with you.
Your child may also be encouraged to swim, but care will need to be taken not to increase the risk of infection. Your child will probably need a wheelchair and/or crutches to assist mobility. If exercises are not carried out as instructed, certain types of treatment, such as leg lengthening, may have to be abandoned before the desired length has been achieved
How will an Occupational Therapist help?
The occupational therapist has several roles during your child’s treatment.
· To determine what equipment may be needed to help you to care for your child at home.
· To make any splints, shoes etc that your child may need.
· To teach you and your child how to use the bathing equipment that is required to get your child in and out of the bath.
· To make sure that your child is as independent as possible.
The hospital O.T. should refer your child to a community team in order for a home assessment to be carried out. This will look at access to your house, stairs, bath and shower equipment and access to toilets. This should be done before your child is admitted for their operation so that everything is in place when your child goes home.
What care is needed during treatment?
Pin site care and General health
It is essential to care for the pin sites properly to ensure that they remain clean and dry. If they become infected, this can lead to more severe infection of the bone - ‘osteomylitis’ - and the treatment having to stop.
You should follow the pin site cleaning regime recommended by your hospital. This usually involves massaging and cleaning the pin sites at least once a day. You will be told if you can have a shower. You are not likely to be allowed to have a bath while wearing the frame.
If any of the pin sites become painful, red, swollen or ooze with a yellow discharge, contact your GP or your hospital nurse specialist for further advice.
It will be important for the child to eat a balanced, nutritious diet for optimum bone growth, with plenty of calcium.
What about Clothing?
The frame can become very cold, so it is important to keep the leg covered if possible, especially in winter. Track suit/jogging type trousers can be adapted so that they fit around the frame. Some designs have zips up to the knee, otherwise the seam can be split and Velcro or additional fabric can be inserted.
Can my child go to school?
It is important to liaise with your child’s school in advance of the treatment to discuss access issues and whether it will be possible to return to school while the frame is on. If not, the Local Education Authority will need to provide a home tutor.
You might want to suggest to the school that you or they distribute a letter to the parents of your child's classmates explaining what the treatment will involve and why it is being done, to prevent the 'rumour-mill' getting out of control. If you wish you can invite other parents to contact you for more information.
Will I need to make adaptations to the house?
It may be necessary to have doors widened to allow wheelchair access and a downstairs toilet and shower may be needed, although most patients can learn to ‘bump’ themselves up and downstairs on their bottoms. You may be able to get financial help towards the cost of house adaptations with a Disablement Facilities Grant (DFG), although as the treatment is temporary some families have found they are not entitled to this help. Contact your local council’s Social Services Department or speak to the hospital social worker for more information.
What happens after the treatment has finished?
Once the desired amount of lengthening or correction has been achieved, there will be a consolidation phase. This means that the frame stays in place while the newly-formed bone gets strong enough for the frame to be removed. This stage of the treatment could last several months until the surgeon is certain that the new bone is strong enough. The frame may be removed gradually over several appointments or in one go – removal happens under general anaesthetic but will be much shorter than the operation to fit the frame. Your child may need to have a plaster cast to allow the bone to strengthen immediately following frame removal.
Physiotherapy will continue after the frame has been removed to keep the limb mobile and increase strength in the bone and muscles. Crutches may still be needed for a while until full strength is achieved. Full weight-bearing too soon could lead to fracture.
Emotional issues – carer
You may experience some feeling of guilt at having put your child through this, especially if they have undergone other types of treatment already; this is normal. After surgery, your child may be scared at looking at the fixator and be angry and blame you for everything. This can be quite hurtful, especially since you as a parent are also upset.
The treatment lasts several months and will be a massive commitment for all members of the family, and you are bound to have ups and downs during this time. Try and keep things as normal as possible for all the family. Take care of yourself, getting rest and short breaks when you can. Do whatever you know helps you to stay well and focussed, as you will have to call on your resources over a long time. If friends and relatives offer to help, take advantage of this to keep housework ticking over and other children cared for, so that you can spend your time with your family or have time to yourself. If you think it would help to speak to another parent whose child has been through similar treatment, the steps family contact register should be able to put you in touch with someone.
Emotional issues –child and young person
Emotional issues – child and young person
· The support of school friends (being back at school for part of the day as soon as possible) can really speed recovery. Properly briefed in advance (a good communication between school and carer and child patient, helps hugely), class-mates can just re-create “normal” at a time when the patient feels anything but!
· Appropriately-aged children can be shown pictures of other children in frames in advance of their class-mate returning to school. All ages can be briefed about taking care around the child in a wheelchair in the class-room, and warned to be careful not to knock the frame.
· Being allowed to be fed up is important!
· Being allowed to be in charge of distraction of the frame was good – and responsible for where the spanner was!
· Not having to respond personally every time someone asks in the street what has happened is also helpful – passing the responsibility to the adult wheel-chair-pusher is part of feeling less different. Preparing a short explanation in advance – 2 sentences, can reduce the discomfort of being “in the spotlight” obliged to explain in detail (this applied to parent/carer too).
· Having the frame covered up (with trousers, or a blanket) in public places, reduces the nosiness of strangers.
· Being looked after by doctors, nurses and physios who really talk to the child carefully and clearly helps lots.
· Hospital school resources are different from normal school – it can be fun exploring that!
In clinics and consultations:
· Lots of information is given in clinics and during ward rounds. Having a parent/carer making notes and making sure that the child has heard and understood all that was said, and all that is planned, is important. Hearing doesn’t guarantee understanding – and having surprises because of that can be really upsetting.
Siblings
If you have other children, spare a thought for them. With younger children there is the tendency for them to be just ‘tagged on’ behind while older siblings can sometimes be left to fend for themselves. Brothers and sisters fight and argue at the best of times. It is absolutely no different when one of your children has a fixator on. If anything, some parents experience extra hassle from siblings, especially if they are older. It is probably fair to say that the older the sibling the more chances there are of ‘teenage strops’. While they are not jealous of the frame, they do still need their parents to recognise them and be there for them; after all, the whole process is also affecting them too.
Further sources of information
Your hospital may have its own information available – please check with them directly. It is particularly important that you follow your own care team’s recommendations about pin site cleaning and hygiene in general, as different hospitals have different methods of doing this.
www.ilizarov.org Ilizarov frame wearer’s support group website – biased towards adults with trauma injuries rather than congenital conditions.
Other types of fixator/distraction apparatus
Orthofix
Taylor Spatial frame
Internal devices eg Albizzia and other intramedullary nails
Tips from parents who have been through it!
(we would welcome your tips to be added here - just email info@steps-charity.org.uk)
- Ensure that the boot of your vehicle can accommodate a wheelchair and that the back seat is long enough so that the child can travel in comfort with legs up on seat. (I had to change my car).
- Prepare rooms and furniture so that the child can manoeuvre easily in a wheelchair. (We live in a small cottage so furniture had to be stored elsewhere and some doorways needed enlarging).
- Ask the child to practice moving up and down the stairs on his/her bottom before the frame is fitted – this helps to build up stamina in the arms.
- Contact Social Services ahead of time so that ramps, wall handles and shower seats etc can be fitted.
- If the child is of school age, check disability access of the school (I had to request having a lift fitted, stairs replaced by a ramp and some lesson venues altered).
- Prepare clothing that can be easily fitted over the frame. (eg an extra jogging bottom leg to enlarge an original jogging bottom leg).
- Prepare lightweight blankets for wheelchair use and lightweight bedding. (Bubble wrap proved invaluable for warmth).
- Plan and organise lots of activities to alleviate boredom and to prevent continuous TV/computer screen watching.
- Make contact with someone else who has had a frame fitted to alleviate fears and anxieties of both patient and carer and to discuss practicalities – positive and negative.
- Shower leg twice daily to help prevent scab formation and infections. Dry and clean pins and pinholes with plain, cotton, unembroidered ladies hankies. (always check the protocol for pin site cleaning with your care team).
steps is grateful to Mr Roderick Duncan MB ChB for reviewing this information and to Ruth and David Reavley, and Marianne Carey for their helpful comments and additions.
