The Background
Liz first became aware of orthopaedic problems in 1979 when she was diagnosed with Paget’s disease of the left
tibia and right hemi-pelvis. Some years later she was referred to a specialist at the NOC and the result was a short
stay in hospital where she had her first course, via drip, of bisphosphonates. Since then she has had several
courses of oral bisphosphonates and, more recently, an infusion of Zoledronate.
In 1991, and again in 2004, Liz fractured her left tibia. On the first occasion the fracture eventually healed with the
help of a plate and bone graft from her left hip. After the second break she was in plaster for 18 months by the
end of which the fracture still had not healed.
During this time she underwent a total right hip replacement, and after this still needed crutches and was unable to
work. Owing to this inactivity she put on weight, was unable to shower for fear of slipping and perhaps most
importantly, was unable to look after or take out her grandchildren.
Liz takes over . . . .
“16 months later, in May 2005, and I am still on crutches and still, technically, have a broken leg, though can
weight-bear. On 1 July, I am to have an Ilizarov frame fitted which must stay in place for 3–5 months. The
specialist - of whom I am told, “If he can’t put you right, nobody can – he’s a brilliant surgeon”, has an excellent
success rate and I am at only 3-4 on his scale of 1-10 in difficulty. But I had a choice to make having been
offered a different solution by a local surgeon - major surgery in fact - and after a great deal of thought, much
advice and help, too, from the National Association for the Relief of Paget’s Disease (NARPD), I decided on the
Ilizarov route.
I was given a general anaesthetic and nerve block and was in theatre for approximately 3 hours. I awoke to this
incredible contraption! There, attached to my leg, by 8 stainless steel rods through the tibia, were three carbon
fibre circles and one stainless steel half-circle at knee level. There were also two titanium nails for stability - the
Pagetic bone having been found to be softer than hoped. All was joined together with various screws, nuts, bolts
and hinges, some of which I was to turn slowly and gently during the months to come. Not a nerve had been
touched and there wasn’t a drop of blood to be seen – brilliant! The first sign of returning sensation was 5 hours
afterwards at a point 10cm up from the inner ankle bone and 12 hours after this I could just wriggle my toes. Full
sensation didn’t return for almost 36 hours.
I remained in hospital for a week during which I had four intravenous antibiotic injections and was put on a pain
killing regime. I was up and walking on the first day. The sorest spot at that stage was where I knocked my right
ankle against the metal frame! Maz Sutherland, the Specialist Ilizarov Nurse, taught me how to clean and protect
the 18 sites and encouraged me to do this myself. I was very anxious about the possibility of pin site infection and
so took great care to follow her instructions.
Screw turning began on the 6th day post-operatively. This was done with a special spanner and each move was
1/4 turn of a square nut, the sides of which were marked with 1–4 spots. In my case, there were three turning
periods, of a month, 4 days and 10 days, of 1–3 nuts and on 1–4 occasions during a day. I was also provided with
an ‘IT’ splint to keep my foot elevated at night – this was to prevent foot drop and avoid shortening of the achilles
tendon - a crepe bandage under the ball of the foot and tied to the frame did the same job during the day.
On discharge I was given a bag containing saline, swabs, cotton buds, gauze, scissors, dressings, wipes and rubber
gloves with which to clean the pin sites and my local surgery topped this up when necessary. I was also given
contact numbers for the Ilizarov team which I could call at any time. This was most reassuring.
After the fitting I attended clinic on a monthly basis, with extra appointments whenever needed. The department
of Endocrinology advised me to take a two month course of Actonel. Incredibly, for a Paget’s sufferer, I had no
bone pain during this treatment, don’t now and have, in fact, only had a few twinges since diagnosis.
For the first 8 weeks I spent most of the time with my leg up as I found walking made it very sore. It has swollen
every evening for the last 14 years and now did so now, the day. I had one pin site which was constantly inflamed
despite several courses of antibiotics. Swabs were taken regularly to check for infection but were always negative.
Paraffin wax dressings were supplied to soften the skin and everyone in clinic was sympathetic and understanding.
But I was unprepared for the unrelenting soreness and pain - I found the apparent lack of progress difficult to
handle. The leg seemed to take at least half an hour to settle down after each simple movement and even just a
change of position in bed at night could send me through the roof. This caused my spirits to flag and drove me to
tears on more than one occasion. I asked in clinic about anti-inflammatories, but was advised against taking them
as they can inhibit bone healing. Just before the frame was removed (after 7 months) it was suggested to me that
all the soreness could have been caused by reflex sympathetic dystrophy syndrome (RSDS).
Once the rings of the frame were parallel, the straights vertical, and the surgeon satisfied with the healing process,
the frame was removed. This was in February 2006. I was given a nerve block and a strong sedative and I
awoke feeling alert immediately.
I was put into a cricket-pad style plaster, with an immobile ankle, for several
weeks, then into a gaiter plaster (which was removable for bathing etc) for three months and now, in June 2006, I
am just using an elastic stocking to help reduce swelling.
Gradually my walking has improved and I can now get around the house without a stick. Having been inactive for
so long my ankle is a little slow to respond and my stamina is poor. My right hip, which was replaced in December
2004, has behaved magnificently throughout. Mobility will improve with time, and soon I shall be back to leading
a normal life again – just wonderful!
On the practical side there are a few suggestions:
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During the screw turning periods, keeping a record of exactly what I did, when (on a form designed for
the purpose), was extremely helpful – saved the memory and ensured compliance.
Frozen peas in a rubber glove were great to calm inflammation as the ‘fingers’ settled around the pins.
I found closed-toe slip-on shoes the most comfortable, as when wearing closed backs, however soft,
the swelling became uncomfortably trapped between the lowest pin site and the shoe. Adjustable
(velcro) fronts were even better.
Wide trousers were great, covered up everything and kept me warm during the winter - I saw the idea
of Thai trousers on the web and made my own.
Trouser legs slipped easily over a thin nylon bag, elasticated top and bottom, and put over the frame.
Skirts left me with cold ankles, as socks were difficult to wear.
A ‘LimbO’ waterproof protector was useful during the plaster stage for bathing/showering.
A Swedish RFSU Etac adjustable bath seat avoided slipping in the bath/shower.
A small tubular ‘pillow’ supported the knee when sleeping on the side – as used by beauty therapists to
support ankles.
This procedure has been a resounding success – the fractured bone has healed, it is straight, both legs are the
same length again (the fractured one previously having been at least half an inch shorter), I’m almost walking
normally and I am enormously indebted to the skill and care of Mr Martin McNally and his team at the Nuffield
Orthopaedic Centre, Oxford – thank you, all, so much.”
Pre-Ilizarov
Immediately post-fixation
Post-Ilizarov