
Orthopaedic Treatments with External Fixators

By Jonathan Pagdin, Clinical Nurse Specialist for the Paediatric Limb
Reconstruction Service, Sheffield Children's Hospital
Over recent years the correction of bony limb deformities using
external fixation devices in children by Orthopaedic Surgeons has
become increasingly popular. External fixators are used to correct
many different kinds of deformities in a large number of conditions
including Hereditary Multiple Exostoses (HME).
At Sheffield Childrens Hospital we predominantly use a type of
external fixator called the Ilizarov frame, (named after its Russian
inventor). This is just one type of many makes of external fixators
and the choice of which fixator mainly depends on which make your
Orthopaedic Consultant is happy with.
External fixators are used for a number of reasons but in HME they
will usually be used to correct limb deformities, whether they are in
the arms or legs.
Treatments with external fixators take long periods of time. Some
children can have their fixators in place for many months. An average
treatment can be six to eight months, but sometimes the fixator can be
in place even longer. Unlike in Russia, the home of Ilizarov frame,
we do not keep our children in hospital for the whole of their
treatments. Most are admitted for a week or 10 days initially and
then seen on an out-patient basis.
An external fixator treatment is complex and we prefer to call it a
programme. A successful programme depends on many things but perhaps
the most important is total commitment from the patient and their
carers.
A number of issues should be considered before you begin an external
fixator treatment programme and some are described below:
What are the treatment options?
Ask your Orthopaedic Consultant to explain why he wants to perform a
correction. Also ask him what different methods are available to perform
the correction. Obviously, he will prefer the method which deals with
all aspects of correction of length and deformities, leading to
the ultimate goal of improving function and reducing discomfort.
There are different reasons for external fixator treatments in HME
but they include straightening a bent bone, lengthening a shorter leg
and sometimes a combination of both. Another reason for using an
external fixator in the lower leg is to recreate or improve the ankle
joint. External fixators are also used in HME in the forearm to
correct problems at the elbow or wrist joints.
What does the external fixator look he external fixator look like?
At first sight most fixators look fairly horrendous but from my
experience most children get used to them very quickly.
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Fixator with key |
Each fixator looks slightly different but they are all mainly metal
devices which surround or lie at the side of a limb and are attached
to the bone of that limb by wires or screws. You should be given the
opportunity to see an example of your fixator before it is applied. This could
either involve meeting another child with the fixator in place
or looking at photographs or models.
This picture (taken from the HME website)
shows one type of forearm fixator.
How does the correction take place?
Most external fixators work in similar ways. The fixator is attached
in such a way that by slowly altering the shape of the fixator you
will gradually correct the bony limb deformity. Usually, to correct a
bony deformity, that bone has to be broken and then corrected.
Obviously, this break is done surgically under a general anaesthetic
when the fixator is applied. The surgical technique and post
operative management should be explained to you before you begin an
external fixator programme.
Corrections are done gradually as new bone forms at a certain rate and
to prevent damage to the soft tissues and nerves.
Why do external fixator treatments take so long?
During an external fixation treatment you literally create new bone. On average, each new centimetre of bone takes 30 to 40 days to
grow.
Therefore a child requiring a five centimetre leg lengthening will
need to wear their fixator for roughly 150 to 200 days. (Wear is
perhaps not the right term because once the fixator is in place you do not have
the opportunity to take it off and put it back on again.)
What do you have to do when your fixator is in place?
There are a number of things that will become part of your daily routine once
a fixator is in place, these will include:
Daily Pin Site Care The area around each site where the fixator
wires or screws enter the skin has to be cleaned to prevent infection
travelling into the bone. Your hospital will have a method of pin
site care and this should be explained to you before you begin your
programme.
Low grade infections are fairly common and can be treated easily but
steps should be taken quickly to prevent infections becoming deep
rooted in the bone. Severe bony infections can prevent successful
outcomes and are very difficult to treat.
Adjusting the External Fixator You will be taught how to adjust your fixator and you should be instructed before you leave hospital. You
should be told how many alterations (turns) to make and what date to do
them on. In practice this is not as complicated as it sounds and you
quickly become experts and never go anywhere without your spanners or
Allen keys.
Physiotherapy Exercises are essential if the programme is to be a
success. We need to make sure your child maintains their joint
movement throughout their treatment. It is not good to straighten a
limb but reduce joint movement in the process.
Mobility External fixators are usually designed to be walked with. Most hospitals encourage their patients to weight bear through their
programmes. Weight bearing not only helps you lead as normal a life
as possible but also helps the bone to form well. You should be
taught how to use crutches or a rolator frame before you leave
hospital. Some may provide a wheelchair.
Some Things to Think About?
Will it hurt? Yes, like any operation, it will hurt for a time but we
will ensure this is relieved whenever necessary. Hopefully, as the
days pass by the pain will ease. Most children say they cannot feel
the actual lengthening and the only discomfort they may have is when
cleaning their pin sites or when the muscles are being stretched.
Can your child go to school? In the past we have found that the
children who return to school cope better with the procedure. Remember
like you, your school will need time to prepare and you should discuss
you childs possible treatment with them as soon as possible. Some of
the problems you may have at home could also apply in school, e.g.
toileting, mobility, eating and "what happens at break-times."
Remember there is a legal entitlement for education and if this cannot
be done in school then some other provision must be put in place, i.e.
home tuition. This is the local education authority's responsibility
and the school can request their resources. Your child may
miss a number of days at school not only because of the admission for
surgery but also because of repeated outpatient visits to check on
progress.
How long will the fixator be in place? This is a difficult question
to answer and the best person to answer this is the consultant. Much
depends on how much length or correction you are hoping to achieve.
Effects on Family Life
External fixator treatment programmes have many stresses and strains,
and these will affect everyone in the whole family. Remember the
treatment is hard work for all concerned and will disrupt many areas
of family life. Siblings can often feel isolated when their parents'
attention is mainly on the child undergoing the programme. You will
be expected to make many journeys to the Outpatient Department
at your hospital, which has implications for parents jobs. Supporting
each other through what can be a long treatment is essential.
Many thanks to Jonathan Pagdin for this excellent article.
For more details on arm lengthening and HME, see the HMESG website at
http://www.hmesg.co.uk/resources/pburge.htm
Noticeboard

From Ian Warren
Edinburgh, 5th May 2004
Thanks for a great day - nice to put faces to names, my family enjoyed
the topics covered, we all got a lot out of this once again, keep up
the good work
Iain. My email is scotbun1@supanet.com
From Linda Ramsden
Barnsley, United Kingdom, 21st May 2004
I am 33, and have had HME since I was a baby. My father had it too but
he died quite young (unrelated) and it was something he never really
talked to me about. My younger brother is a sports teacher and soccer
coach and has no signs of HME. I have had 8 surgeries and still have
8 tumours on various parts of body - not all on joints - I do have one
on my head and one on my ribcage. As a child and teenager I was very
sporty I played netball, hockey (you will understand how painful
this was when bashed on the leg) and I was even doing circuit training
up to the age of 26. I was also in a high powered physically and
mentally challenging job up until 2 years ago. I had pneumonia and
since then my health has plummeted. Two of the lumps on my leg have
grown back and one cannot be removed due to its proximity to a major
blood vessel and the other is now the size of a grapefruit, (so much
for them stopping growing when you are a teenager!) I am currently
trying acupuncture and am thinking about reflexology next, I use
lavender oil (as recommended by another group member) and also a
heated wheat bag. Mattress toppers are great for pressure relief on
your bones too!
I can no longer do any kind of contact sport and the most physical I
get is swimming which I find great for relaxation. I do manage to
walk my dog but find myself absolutely exhausted after walking less
than a mile. I wonder if many more of you feel tired all the time.
I have had to take a job within an office where I can be sat down for
the majority of the time and am lucky to have good support now (after
much battling for equipment etc) from my employers. I am currently in
the middle of applying for disability living allowance and also a
blue badge for my car but am having problems with any of the GPs even
knowing what HME is. Hope some of this info might be of interest to
others on the notice board. My email is
lindaramsden21@hotmail.com
From Mandy Coombes
Cheshire, United Kingdom, 8th April 2004
My daughter was two when we found out she had HME. We drop the "H" as
no one else in our family has the condition. She had one lump removed
from her hand last year and, last week, had two removed from one foot,
one from the other foot and one from her wrist removed. She's only
three years old. There are other lumps but time will tell if they need
to be removed. I have spoken to a few adults with the condition but it
would be nice to hear from anyone with young children. My email is
robert.coombes7@ntlworld.com
From Helen Jones
Flintshire, United Kingdom, 30th March 2004
I have had HME all my life and have a large number of lumps all over
my body. I have only had to have two of these removed however, due to
them not causing any problems. I would like to hear from anyone who
has got any on their rib cage as I have been having problems with
chest pain and am now informed that this is probably due to a "lump"
being on the same. Again I would also like to hear from anyone who has
a number of lumps all over the body as I was lead to believe that they
are mainly on the legs, arms and spine. My email is
handbj@supanet.com.
From Janet
Sheffield, United Kingdom, 24th March 2004
After several years of odd lumps growing and no one knowing what they
were, I have just been told today that it appears I may have HME,
although further investigation is needed. I am quite worried now after
reading some of the messages left on here. I have suffered for years
and have two painful lumps which cause me no end of pain and
discomfort. I have had operations but they have grown back each time.
I want to have children in the future but nobody can tell me if they
will have HME and if they do, will it be worse than what mine is? I
also don't know if I have them elsewhere on my body. Is there any way
of finding out?
Do the doctors automatically check to see if you have them elsewhere?
I have problems with my back and am now wondering if this is the
cause. If anybody can shed any light on my questions you could help me
put my mind at rest! My email is booti4u1971@aol.com.
There is 50% chance of passing HME on to your children.
From Karen
United Kingdom, 14th March 2004
My name is Karen and I am from Scotland. I have got exostoses on my
heels which mean I can't wear shoes without my feet being padded. I
also have osteoarthritis on my toes. I would love to hear from anybody
else who has the same problem. My email is claymores04@aol.com.
From Kelly
Brighton, 21st April 2004
My little boy Reuben (2 years old) has HME inherited from his father.
I thought I would share the happy news with other members of the group
that Reuben is to appear in a baby picture book which is on sale now
in good book shops. Its called 'Amazing Baby: I love you' published
by Templar. If you come across a copy, youll spot my Rueben in the
bath. He's such a beautiful boy and I'm very proud of him :o). My
email is chuckleplum@yahoo.com.
Tax Returns

For anyone who has to complete a Tax Return for the year to 5th April
2004, question 19 on page 8 of the return can have consequences for
the group.
You can nominate a charity to receive all of any tax repayment that
may be due to you (tick box 19A.1) or share a repayment by entering an
amount in box 19A.2.
The charity code for our group that needs entering in 19A.3 is
SAJ29JG.
Put a tick in box 19A.4 this will enable the donation to be treated as
a Gift Aid donation and give the group a further 22% and a tick in
19A.5 will ensure that you will get a personal thank you from the
group for your effort (although we will be happy for you to remain
anonymous!)
The system only works for repayments of tax if your Return shows
that there is a net payment of tax due to the Revenue rather than an
overall repayment then Im afraid that the group cannot help and the
payment will need to be made by you!!
Editor's Bit!

Here I am again, moaning, I shall leave it to your better conscience
to help me out with the next newsletter. Enough said
!!!
Ok, hope you are all well and of those of you who went to Edinburgh
had a thoroughly good time. I was reading through those seminar
evaluations and I came across a point from a member who would like to
know where to get pencil grips or foot pads, or various other bits
like that from. I buy mine from our local Scootability shop.
However, as I said I do have to buy them. But apparently, as I found
out from our hospital, the hospital can provide them free of charge
and if they cannot they will put you in touch with occupational
therapists that can. Also my local social services have been very
helpful.
We have a local Red Cross near to us, whom are great at hiring out
equipment, when I say hiring out you do not have to pay anything other
than make a donation. I presume these Red Cross places are across the
country someone else to ring who would more than likely be able to
put you in touch with people who can help.
Have a good summer and please, please, please start sending in your
articles for the next newsletter. I have no case histories left so
hurry up and make my day.
Take care, Debi
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Disclaimer

Please note that any views
expressed herein, by individual
group members, are not those of
the Group as a whole and
separate entity. The HMESG cannot accept responsibility for any goods or
services mentioned in the Newsletter.
HME Support Group

HME Support Group
PO Box 395
Headington DO
Oxford OX3 9WF
United Kingdom
Tel. +44 1438 861 866
Email: support@hmesg.co.uk
Web:
www.hmesg.co.uk/
HME Support Group Trustees
 |
| Judith Fletcher |
National Contact
Midlands/Wales
0121 742 3078 |
| Steve Harding |
Treasurer |
| Sarah Nicholls |
Secretary |
| Debi Roper |
Newsletter Editor |
| Pat Savage |
National Contact
South
01305 772225 |
| Dawn Searle |
Fund Raising |
| Helen Small |
Chair |
| Stephen Watson |
National Contact
North/Ireland
01204 699984 |
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