Leg-length discrepancy – a DDH journey of shoes & surgery
Owing to my hip dysplasia and somewhat ‘wonky’ pelvis, my legs have always been different lengths. But that leg length discrepancy has varied over time. If you’ve ever had a go at cutting your own fringe (never advisable I find it always leads to endless tinkering one side then the other until it’s too late and you're scalped...) then you will understand the journey my legs have been on. Every so often leg length becomes an issue, and by replacing my knee and giving me a straight right leg for the first time in my life, my left leg is once again too short!
Most people with DDH have some form of leg length discrepancy and managing the impact of that is much discussed in forums such as those managed by Steps Charity or the International Hip Dysplasia Institute. Even a small difference can cause back problems that we don’t need on top of our hip challenges. There are different ways to manage this and two I’ve experienced; adaptation of my shoes (external raises or orthotics inside the shoe) or leg lengthening surgery.
I finally got to walking aged 3 ½ after a fair amount of surgery and I gradually grew quite lopsided. Whilst my left leg looked shorter – and standing I would lean significantly to one side - the problem wasn’t that the leg itself was shorter. Rather that it had been set so much higher (because the socket was missing) and so it rested close to the top, not the bottom of my pelvis.
In 1988, at the age of 16, I had my left femur lengthened. This was a relatively new surgery developed to help people with restricted growth like dwarfism. It was also being used for people like me who had significantly different leg lengths. This surgery essentially broke my femur in two, screwed in an external fixator either side of the gap which I then turned ¼ mm every day for several weeks with an Allen Key (yep, looked just like the ones we dread from Ikea!). This lengthened the gap, into which new bone grew. Once the new bone hardened the pins were simply unscrewed, the wounds healed quickly, and I had a longer left leg. It didn’t hurt to turn, to be honest the most painful part was cleaning the pin sites which would get infected (a bit like soreness of a new pierced ear or belly button) and I had some sciatica as the nerves and tendons had to stretch to fit.
What that surgery gave me, aged 16, was my first ever experience of standing almost straight. My shoulders were level, and importantly for my singing, I could expand both sides of my lungs equally. My voice tripled in size overnight! I was also able to walk with much less of a limp until my late 20s until my left hip was so worn and arthritic my pelvis was shifting and length was again an issue. This time it was managed by adding an external shoe raise to my left shoe (between the shoe and the sole).
The downside of the lengthening surgery came when I had my hip replacement in 2003. Normally in cases like mine a surgeon will address the leg length discrepancy whilst fitting the new hip and so level the hips. But of course, now, my left leg was too long! By now you should understand the fringe-cutting analogy – LOL!
What it did do, is reset the hip to where it was after my leg lengthening surgery, and so I no longer needed the external shoe raises, but a much shallower inner orthotic. This was great as it’s more flexible – the orthotic can be moved from shoe to shoe, rather than being able to wear only the shoes that have been adapted.
So why am I writing about this now? ….and sharing photos of my bad 1988 perm to boot! Well, by replacing my right knee and thereby straightening that leg, it is once again too long – almost 2.5cm. If I don’t address this, it will be difficult to get off crutches and I will start to cause the same problem that led to my knee replacement where my leg bends inwards to compensate for itself and causes abnormal wear.
And so last week I was back with the podiatrist to analyse my gait and figure out the combination of external and internal raise I'm going to need. This morning I posted a shiny new left trail shoe to have an external raise added – 13mm at the rear gradated down to 4mm at the toe. Once that arrives back my podiatrist can re-asses the inner orthotics which are also designed to manage my foot position, size difference and the hyper-mobility I have in other joints.
It's amazing what modern healthcare professionals can achieve isn’t it? Not just in surgery but with a holistic approach to our biomechanics.
Meanwhile I continue to swim 4x a week and walk locally on my crutches, and I’m amazed how many miles I have clocked up on my Virtual Pennine Way challenge. Since I re-started, post-surgery, I have walked a staggering 62 miles on my crutches. Which means there are just 6 miles left to go to finally complete the full challenge I had to abandon last year.
Thank you to everyone who has cheered, liked, supported and donated along the way – see you soon at the finish line. Love Jill xx
Jill Pringle was born in Sheffield with bilateral hip-dysplasia. She has had several surgeries including open reductions, leg lengthening, hip and knee replacements. Her blog raises awareness of living and walking with the condition and her walking to raise money for Steps Charity Worldwide to which you can donate here.
Winter walks & wobbly hips
So the good news is I’ve now completed 41 miles of my virtual Pennine Way challenge. If I’d been walking the real trail, I’d be in Hebden Bridge in Yorkshire by now. But in lockdown-land I’m still doing my winter walks safely and locally in Walton on Thames.
My progress has been a little steadier than in my first week though, for two reasons.
First, I overdid some sweeping at home, and got myself out of alignment. For a few days I couldn’t move without severe pain in my knees, right hip (the real one, not metal one) and neck. Even my gentle yogic sun-salutations were too painful. Swimming in a warm pool is normally the best re-alignment – which of course is not allowed right now – but thankfully, visits to my osteopath are within the rules. My heart goes out to everyone who can’t exercise fully right now, and especially diff-abled people where their options may be even more limited.
The second reason was, of course, the snow. I love watching the snow fall and my partner will tell you that I turn into an 8-year-old giddy-kipper! My body, however, doesn’t compute. The fragile biomechanics lose their grip, and my fear of falling goes into overdrive.
I know I’m not alone in this. I was contacted by a new friend with DDH via the blog, whose hip dysplasia story is quite similar to mine in terms of childhood diagnosis. She commented that she dreads the snow for the same reasons.
I had my femur lengthened when I was 16 – very innovative at the time the surgery was done in the late 80s and for the first time I was straight if I stood still. It definitely helped my back, and also my singing (as I could use both sides of my lungs for the first time), but it meant that my orthopaedic surgeon couldn’t set my hips level 16 years later when I had my left hip replaced. And today, adds to the balance issues, as well as the unique gait.
So for a few days the closest a got was watching the winter walks series on the BBC i-player (well worth a watch if you want some calm and spectacular scenery).
In the last week, as the snow has passed, I’ve got back into stride on my own winter walks.
And I’m very thankful for them.
Jill Pringle was born with bi-lateral hip dysplasia. She is walking the virtual Pennine way to raise awareness of DDH and money for Steps Charity, whose motto is We Don’t Take Walking for Granted. You can support them, and Jill’s walk, on JustGiving here.
Lockdown Walking Challenge: little and often on the virtual Pennine Way
I wholeheartedly support the need for another national lockdown until we are all covid-immunised and it’s safe to mingle again. My belief that it’s the right thing to do, didn’t however stop me from groaning as the local outdoor swimming pool closed last night and my next chance to unlock my joints swam away into the sunset! Well, maybe it’s my chance to set a lockdown walking challenge 2021.
I have been doing daily shorter walks around home – I usually take a walk at lunchtime or late afternoon for half an hour, to keep my joints moving and detach from tech for a while. In the first lockdown last year I used my hour a day outdoor exercise religiously.
This Saturday I walked with my trusty poles for 3.5 miles along the river. Caitlin has been doing her usual sterling job of keeping the BeaRCats community together virtually by getting us to pledge miles towards a team goal. This weekend we collectively smashed Lands’ End to John O’Groats by some distance and it was nice to play my part.
I’m definitely missing striding out in the open countryside. On New Years’ Eve I commented to my partner that I hadn’t recognised just how much walking the South Downs Way in 2019 had contributed to my mental health in that year. It gave me a big goal, a sense of purpose and helped me embrace @WalkingJill – the girl born with hip dysplasia – as a big part of my identity. It also helped me deal with my dad’s death that year and so when my mum died towards the end of 2020, I feel that I haven’t had the same outlet to process that she's gone.
The walking I’d done on the South Downs hadn’t just been about the physical action of one foot in front of the other. It was about connecting with nature, with my family childhood in the Peak District and ultimately with myself and my different ability. The national park was my own personal mindfulness app.
Since the lockdown state is likely to continue well into 2021, I feel the need to get more consistent about finding that walking rhythm and having that challenge to focus me.
In lieu of swimming I will have to use my wonky-yoga to try and manage the locked joints. And to do my lockdown walking miles this year in much smaller chunks without travelling.
Steps Worldwide’s work over the last 40 years reminds me that there are many people who can’t take walking for granted. 250,000 people are born with or develop a hip disorder every year. In 1971 I was one of them and I'm lucky that I can walk, just a bit differently.
I might not be able to use my right to roam the moors right now, but I can walk every day and I need to put that to some good.
So from tomorrow I’ll start logging my local daily walks towards a target of 268 miles – which is the length of The Pennine Way. It’s still my dream to walk it for real one day – the oldest and most challenging national trail from the Scottish Borders through Northumberland and Yorkshire down to the Derbyshire Peak District so close to where I grew up.
But in 2021 I’ll walk The Virtual Pennine Way.
And I’ll do it my own diff-abled way.
You can follow my progress on Facebook @WalkingJill and if you want to donate to Steps Worldwide you can do so here.