My gammy leg: leg-lengthening surgery

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My account of my childhood experience of disability, a result of being born with one leg shorter than the other, was published in the Sunday Times Magazine this weekend. I was in and out of the operating theatre more than 20 times by the age of 15 as I underwent leg-lengthening treatment using an external fixator (and a second approach, which slowed the growth of my stronger, right leg). Left untreated, the discrepancy between my legs would have reached between 10cm and 15cm.

Thanks to the wonderful care and treatment I received at The Royal Hospital for Sick Children in Edinburgh, there is now little evidence that this was the case, and I live a very active lifestyle.

The only reminder is the network of scars that track my legs: up either side like Adidas stripes, a silver slash over one hip, a line like a zip up the front of my left thigh.

Full text of the article and the PDF clippings are available on the Sunday Times website here, and after the break. A shorter version of this article was also reproduced in The Week magazine.leg lengthening ST Mag 1

MY LEFT LEG
By Cal Flyn, published in The Sunday Times Magazine
14 September 2014

Cal Flyn was born with one leg shorter than the other. Her only option was years of radical — but brutal — orthopaedic surgery. Here, she recounts a childhood spent in hospital wards

They say that beauty is symmetry. I hope this is a myth, because I am the least symmetrical person I know. My feet are a size apart. My nostrils mismatch. In photographs I have a definite good side. But, most of all, the problem is in my legs: I was born with one leg shorter than the other.

Nobody noticed at first. It wasn’t picked up on the ultrasounds or during the brief once-over after my straightforward birth, and my father had headed happily home to fetch my brothers by the time the discovery was made. A young doctor, pausing by the crib to check all my infant limbs were present and correct, that they bent and twisted in all the right places, looked up at my mother to ask with devastating calm: “Has this baby been dropped?”

I hadn’t. Nevertheless, something was the matter with my left leg. By the time my father returned, with two small boys in tow, it was clear that it was serious. A consultant had materialised at the bedside, my mother was in tears. “There’s a problem,” the consultant confirmed, grim faced. They had discovered that the baby — her baby, their baby, me — had an abnormally short thigh bone, a variant of a condition called proximal focal femoral deficiency, which, left untreated, would result in a discrepancy of 10 to 15cm by adulthood. The only solution, he said, was surgery — a radical orthopaedic treatment, staggered over a period of months and years.

At some point in the future they would break my femur in half and then, with the help of a metal frame (an “external fixator”), they would slowly crank the two halves apart. New tissue would grow up in the gap, creating extra inches of bone out of nowhere. It was a daunting prospect for my parents, but the nurses told them that they were lucky: only decades earlier the leg would simply have been lopped off there and then. They didn’t feel very lucky.

“This is not your problem,” the consultant chided my weeping mother. “This is Caroline’s problem. Your job is to make sure that, when the time comes, she can cope.”

And so began a childhood defined by x-rays and temperature charts, fat-soled shoes and nil-by-mouth signs. We made an annual pilgrimage to meet the orthopaedic surgeon Malcolm Macnicol at his clinic in Edinburgh, a three-and-a-half hour journey from our home in the Highlands, until he decreed that I was ready to begin the leg-lengthening process. I was eight. By this time, the discrepancy between my legs had reached 7cm.

The nurses told my parents they were lucky: only decades earlier, the leg would simply have been lopped off there and then. They didn’t feel lucky

After the Second World War, the Russian army surgeon Gavriil Ilizarov, while posted to remote Siberia, discovered that war-shattered bones could be encouraged to heal if pressed back together like a puzzle. To do this he created a circular metal cage, with pins poking like bicycle spokes into the limb to hold the bits of bone in place. One patient who mistakenly turned the screws in the wrong direction — thus pulling the pieces apart — revealed that bone could be made to grow using the opposite technique.

Word did not reach Europe of Ilizarov’s groundbreaking work at his Kurgan clinic until 1980, when the Italian explorer Carlo Mauri, on an expedition in the region, asked him to treat a decade-old mountaineering injury that had defied conventional treatment. The treatment was a success and Mauri’s astonished Italian surgeons travelled behind the Iron Curtain to learn the technique. Today, around 500 patients are treated with external fixators a year in Britain.

I was fitted with a modern version: an Orthofix fixator, which looked like a black bicycle pump stuck on metal prongs in the side of my leg. I was confined to a wheelchair or crutches, taken out of school and was in and out of hospital throughout the process, while Mum was given the job of using an allen key to extend the fixator and cleaning my “pin sites”, where the metal screws stuck out.

Mr Macnicol was an expert in his field — he later became president of the British Orthopaedic Association — having trained in the Orthofix method with its developers in Verona, Italy. He explained the process in terms I could understand: in the break in the bone a soft, mineral-rich tissue would gather to form a “callus”. This material had the consistency of melted cheese. If pulled, it could stretch. It would have to be slow, however. Too fast and, like cheese, it would snap apart. It would also be painful: throughout the treatment my leg would be screaming to return to its original form.

As with any extended surgical method, there were complications. The initial correction rate — four turns of the allen key a day; equivalent to a quarter of a millimetre growth — was too hurried, too painful, so we were forced to go at half-speed. I was plagued by repeated infections of my pin sites. Once, the fixator lost its grip and slid back, making the bone underneath bend and bulge against my skin, resulting in a tearful and frightening drive to Edinburgh in the night.

The new bone did not form as quickly as had been hoped, so a chunk of bone was cut from my pelvis and inserted into the gap. Later, they slowed the growth in my right femur and tibia to help even my legs out, so I am now around two inches shorter than I should be (a diminutive 5ft 2in). I developed scoliosis as my spine and pelvis twisted to compensate for the discrepancy between my legs, and a “valgus heel” that collapsed to the side when I bore weight.

Reading my medical notes now, the precise, unflinching language makes me wince: “persistant leakage from pin sites”, “considerable disuse osteoporosis”, “bone failure”. One discharge letter reports, cheerily: “no complaints apart from slight rubbing over the [metal] plate which is the site of crepitus”. I have to look up “crepitus”: “a peculiar crackling, crinkly, or grating feeling or sound under the skin”. Oh, yes. The memory makes me shiver.

Yet there is nothing like spending time in a children’s hospital to remind you of the myriad ways in which you are fortunate. The sheer variety of manners in which the body can malform is sobering: babies born without hip sockets were fixed with legs spread in Y-frame plasters; children missing crucial organs were fitted with an assortment of bags and pipes; in the canteen we met a chirpy Glaswegian dwarf who was undergoing the same treatment as me — but on both legs, above and below the knee, and both arms.

During one stay, I befriended Ashleigh, a 13-year-old whose joints would spontaneously dislocate. “It’s quite funny sometimes,” she confided across the gap between our beds, “although it hurts, of course.” Later she sent me a card from hospital. “Merry Christmas and a Happy New Year,” it read in a curly, cursive font. Then underneath in her bubble handwriting: “My knees gave out while walking down the stairs on Christmas Eve, so I guess I’m back here for the holidays. Seeya soon. XXXOOO”

These friendships that formed on the wards took on an odd intensity. We got to know each other during our worst times, listened to each other sobbing behind curtains and averted our eyes as nurses bustled to and from our bedsides with full bedpans and bloodstained laundry. In the same way colleagues can come to respect each other’s skill and dedication, fellow patients recognised each other’s experience, their capacity for pain, their stoicism.

There was a social hierarchy of sorts, one that inverted the normal playground policy: the truly ill, whose grave prospects and wealth of medical experience elevated them to a sage-like status, sat comfortably on top; the bona-fide disableds (who, like me, were confined to chairs or crutches and had nothing to prove) came next; those suffering from “invisible disabilities” — the epileptics, diabetics, those with chronic fatigue or dangerous asthma attacks — were at the bottom, and their fears and frustrations cavalierly disregarded by the rest of us.

It was freeing to get away from the suffocating sympathy, the startled silences that followed us around our home towns. Disabled children arouse feelings of guilt and pity among strangers — understandable, but exhausting for those at the centre of it. Mum would become furious with people who spoke to her as if I couldn’t hear. (“What’s she done to herself?” they’d say. “Ask her yourself,” she’d snap back.)

We had to overcome our own prejudices, too. Mum and I took a long time to admit that I was disabled — that we could use disabled bays in car parks, for example, or apply for disability allowance. We both felt that somehow this word did not apply to us. I was fine, wasn’t I? I wasn’t disabled.

In 1995 I was selected by the charity Dreamflight to be flown to Florida with 190 other British children undergoing long-term or palliative treatments. We were treated like rock stars. We skipped the queues for all the rides at Disney World, waving merrily to the waiting holidaymakers as we were wheeled to the head of the line. The annual cost of the Dreamflight trip is in excess of £750,000; we lucky recipients accepted it as our due, glad-handing the celebrity sponsors and calling for our private nurses in the night.

To me, these were perversely wonderful days. I felt special, part of a unique, close-knit community. My hospital, the Royal Hospital for Sick Children in Edinburgh, had an incredible atmosphere. There were murals on the wall, a secret hangout room for teenagers and a radio show staffed by volunteers who made shout-outs to our friends on the other wards. We fashioned party hats from grey cardboard sick bowls and dressed up for Hallowe’en. Once, I made scones from my sick bed, stirring the mixture with my canula-free hand and baking them in the staffroom oven. Nurses became like aunts who hugged me hello and cried when, finally, we said goodbye.

Because, one day, the worst was over. In October 1996, 18 months after my fixator was fitted, it was removed and replaced with an internal metal plate. Within days I was back on my crutches and sent home with the challenge of relearning how to walk. It was all new to me: the rolling of the foot on the floor, the heel hitting the ground and then the toe pushing off; the bending and straightening of the knee; the weight-bearing through a leg which for so long had been almost useless.

I was excused from school once a week to see my physiotherapist, Lorraine, who coached me with an intensity more befitting a child tennis prodigy. When I had the basic step mastered, we moved onto balance boards and skipping, then badminton over a Thera-Band “net”. By the time I started high school, you could barely tell me apart from the other pupils. There were small signs: a limp, more pronounced when I was tired. I was excused from high-impact sports in PE, such as long jump and rugby, during which I would moon around on the touchline with the girls who had forgotten their gym kits.

On the occasions I returned after a spell in hospital (I had my metal plate exchanged for a longer one, then removed entirely) I revelled in my new-found popularity. Everyone wanted to try my crutches, or be my “hall buddy” and leave class early to accompany me through empty corridors. But once I’d recovered and the crutches had been returned, I would fade back into obscurity.

My final operation, to straighten my new, bowed femur, took place in October 2000. I was 14. Altogether, it took six years and more than 20 surgical procedures. But today I am firmly in the land of the able. I dance, horseride, rock-climb, hike… I ran a 10km race last year, in reasonable time. The only reminder is the network of scars that track my legs: up either side like Adidas stripes, a silver slash over one hip, a line like a zip up the front of my left thigh.

Sometimes it feels as though, during those years, I lived in a parallel world where everyone was broken. Unexpectedly, I missed it. The night I returned home from my final hospital stay, I sat on the stairs in the dark and cried. Now I was just another teenager with homework and boy trouble, with no excuses or get-out clauses. I wasn’t automatically “brave” any more, just for getting through the day. “Brave”, “special” — these words are anathema to many disabled people, but I had believed them, held them close.

It had been simple for me: it was my parents who had to cope, my mother in particular. When I think of the warning that the consultant gave her at my birth — that this was my cross to bear — I know that it wasn’t true. Although it was I who wore the big shoe, then the metal frame, and I who went into theatre, I was only a child. I didn’t have to figure anything out, didn’t have to campaign or worry; it all just happened around me. People would tell me when solutions had been found to problems I didn’t know had arisen.

For my parents, on the other hand, it was a time of enormous upheaval. Mum left her job as a primary school teacher to become my full-time carer, learnt to clean my pin sites and dose me with painkillers, and lay for long nights in hard hospital beds. Dad’s job was to hold the family steady — psychologically and financially — keeping things as normal as possible for my two brothers, who were making momentous life decisions, sitting exams and applying for university, while our parents were distracted by a diary full of outpatient clinics and physiotherapy appointments.

I often wonder if I could do what my parents managed. I had not truly comprehended the emotional toll of having a disabled child until I came to write this article. I read a booklet handed to my parents after my birth that addresses the shock explicitly: “Grief is commonly felt,” reassures the author, “grief for the loss of the ‘normal’ baby expected. Others feel: depression, anxiety, isolation and a feeling of alternating guilt and anger.”

It had never occurred to me that anyone would feel guilt over my gammy leg. We have never been sure of the cause. At the time of my birth, medical staff did not encourage questions along these lines for fear of engendering regrets among parents. “The cause is not important,” the doctor told Mum, and that was the end of it. So I have never been sure if my condition is hereditary. Might my own children suffer from the same affliction? Could I cope with the implications if they did?

This new uncertainty prompts me to track down Mr Macnicol, now retired. I call him at home, my hands shaking, and ask if he remembers me. “Of course,” he says, and agrees to meet me for a coffee in Edinburgh. It’s been 14 years, but we recognise each other immediately and sit together, smiling, at a table. My fears, that I could pass my condition on to my own children, he dismisses offhand: “No, you won’t.” Although the cause, he says, is not entirely understood. It is thought that toxins must stunt the unborn child at the stage when the limb buds are in development — in the way the Thalidomide babies were rendered limbless or deformed — although in most cases the particular toxin is unknown. “So you don’t need to worry yourself about that.”

He is delighted with the results of his labour. “You can hardly tell,” he says, passing a critical eye over my legs. “I was a bit worried that you would limp in here to meet me, but your pace is very even. It’s gratifying to see the success stories, years later, when I can see we did a good thing. Limb-lengthening is a long, hard road and not every patient is so grateful at the end of it.”

Sometimes, patients or their families cannot cope, and the treatment must be cut unsatisfactorily short, before the legs are truly equal. Others, particularly those being treated for dwarfism, risk elongating limbs that never develop the strength or control to match. Others still become repulsed by the “bad” limb during childhood and demand for it to be amputated. It sounds a bizarre request, but to me the impulsion rings true. I remember staring at the metal frame sticking from my thigh one evening and feeling nothing but disgust for my own flesh.

But it was worth it, all of it. I am fixed.

We hover at the door of the coffee shop as we say our goodbyes. “There’s your bus,” says Mr Macnicol. “Don’t let me make you miss it.”

We shake hands, then I turn and run. Across the road, and along the pavement, but when I reach the bus I change my mind, I don’t stop. I just run, and run, and run

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5 thoughts on “My gammy leg: leg-lengthening surgery

  1. Kelly says:

    Lovely article Cal! I guess, as children, we never really think about the impact of things that happen to us on our parents, or what might be going on in their lives. It’s not until we’re older, and in a similar stage if life that we realise all the things they did for us…

  2. Caroline says:

    “I wasn’t automatically “brave” any more, just for getting through the day.”

    This is exactly how I felt! It took so long to readjust to not being defined and excused by being “the girl with the leg”.

    I have a very similar story to yours, and the same name, as it happens. Thanks for sharing this.

  3. Melissa says:

    Your story really touched me as it has remarkable parallels to mine, thank you so much for sharing :-)

  4. Alexandra Perraud says:

    I have the same story as Cal, was born with my right leg shorter and had more than 20 operations to correct the lenght of my leg, I also had more than 10 cm difference between the two legs and now have only 2 cm difference. I am french and had the chance to have Professeur Bainvel, french surgeon based in Nantes believing that something could be done when some doctors gave up and told us that I will finish my life in a wheelchair. The journey was not easy but it was worth it, like Cal I limp when I am tired and I have a nice collection of scars and metal plates in my leg. This adventure happens 37 years ago and I know that lots of progress has been made since.

  5. TENNILLE. COOPER says:

    Thank you so much for sharing your story. I am a 38 yr old woman who also has PFFD in my left leg. I also am.one of the lucky ones who received an option of surgery. I think often how it was literally a miracle the team of doctors saw something in me a 6 year old sitting in the amputee clinic waiting to see the doctor who eventually would of amputated my.perfectly good left leg. I The surgery I had was so.different than the.one you received. I am ind desperate need of advice on issues that have arose over the last few years that have affected my “good leg” Honestly at this.point the problems have affected my quality of.life. I.would.lo e to network with you. please email me if.you have a chance.

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