My name is Xandra, I'm 34 and I was born with Hip Dysplasia. And it is something that has been part of my life since. Filled with ups and many downs that come from living with this condition.
After I was diagnosed as a new born, with bilaterally displaced hips, I was treated with a brace that looked like this:
This was my first Christmas, age 4 months, you can just about make out my brace there.
I was treated with this for the first 18 months of my life, wearing it for 24 hours a day, 7 days a week. (Bathing and nappy changing were something of a challenge – something my Mother deserves a medal for!). I had regular check-ups at the hospital to monitor the angle of my hip joints.
Once the hospital was satisfied that my hips had been treated successfully – when they had reached the ‘normal’ angle - I was discharged.
Fast forward 15 years, I was a (relatively!) normal teenager. Then one day, during a physics class at school, I slipped from my stool and lost my footing slightly. It wasn’t an awful accident, it was just a stumble, something you wouldn’t normally think twice about. Once I’d steadied myself I tried to put my weight through my leg. Then all I felt was PAIN. I couldn’t stand. I remember an ambulance. X-rays. And being off school. It was the first of many Labral tears.
The hospital gave me the most stylish accessories ever, which was the beginning of my trendsetting ‘hip’ days… a pair of wooden, what could only be described as, ‘granny-sticks’. In my head, I looked like this :
My Mum recalled to me, “The school had a problem understanding what was wrong with you. I had to go to the hospital and ask for them to write a letter explaining your condition and that you needed to rest”. That was the first of many times to come, where I/we would have to explain what was wrong with me. Nobody had ever heard of it or could understand that someone of my age could have something wrong with their hips.
Cue this feeling again:
That little fall wasn’t really the cause of anything, it was an accident waiting to happen for already weak and unstable hips. It was also the beginning of MANY appointments, long journeys to the orthopaedic hospital, CT scans, X-rays, MRI’s, physiotherapy & rehabilitation, joint manipulation, joint injections and arthrograms, arthroscopies, surgeries, etc. etc. etc.
Looking back, I remember it was painful experience, but I had no idea what pain was until I hit my twenties. The cartilage in my hips was gradually wearing down. Like the tread on a tyre, that would slowly wear down if all the tyres weren’t perfectly balanced. As my Acetabula (hip sockets) were too shallow, the femoral head (ball joint at the top of the thigh bone, that fits inside the hip socket), was slipping, cracking, clunking, pulling, popping and moving about in the acetabula/socket. So, over time, you can imagine the damage it was causing. Not to mention, the pain.
Here are some X-rays to give you an example of where my hips were on the scale of ‘normal’…
As you can see, the ‘normal’ hips have deeper Acetabula (sockets) and the femoral head (ball) fit snuggly into those Acetabula. My hip sockets are more shallow and do not give my hips the same coverage.
My Surgical History
Things got so bad, I had surgical intervention; a preservation operation. And to be honest with you, if I could go back in time and tell my younger self anything, it would be “get the surgery done asap”. Because there comes a point whereby too much damage has been done and the surgery can no longer cure or ‘delay’, which is the correct word I’m looking for there, any onset of Osteoarthritis – which is what eventually happens when there is no more cartilage left. The preservation surgery was an Osteotomy. However, I waited and put it off as long as I could, thinking I was doing the right thing. Some days were really bad, where I couldn’t even walk. Then others were not so bad, so I would think, “…it’s not serious enough for me to get anything done”, which makes sense, because why would anyone choose to make a drastic decision about such an invasive and major surgery if it doesn’t feel like you need it sometimes. But I was missing the point. If you have been diagnosed with Hip Dysplasia, your hips, at some point, will get worse – when however, is different from person to person, there are so many varying degrees of Hip Dysplasia. For me, it DID get bad. Very quickly. It seemed to happen overnight. Any symptoms I was feeling, even if they were only every 2 weeks to begin with, then every week, then daily, were signs of damage being done and it becoming too late for the preservation surgery to work.
Now in my thirties, having lost all my twenties to the pain, inconvenience and complications Hip Dysplasia brings, I’ve had the following surgeries;
December 2006 - Right Arthroscopy
This was a keyhole surgery, where they go into the joint, have a look around to spot any issues and damage, then neaten up the torn cartilage, ‘trimming’ it to stop it catching within the joint.
March 2009 - Left Arthroscopy
June 2010 - Right Arthroscopy
June 2011 - Right Osteotomy
This involves literally cutting the entire socket from the pelvis and rotating it outwards, to give more coverage and weight-bearing surface area for the femoral head (ball joint) and then pinning it back in place with titanium screws. It was hands-down, one of THE most painful experiences of my life. The first 4 days I was bedbound, with my leg strung up, a total of ten days in hospital.
November 2012 – Right hardware removed.
The titanium pins used to pin the bones of my pelvis together during the Osteotomy, were taken out.
January 2014 – Left Osteotomy.
They had improved this procedure by the time I came to have the left Osteotomy, so I spent a lot less time, almost half that of the first Osteotomy, in bed and in hospital, 5 days in total. It was still painful, however as I was mobile more quickly than the last time, I had much less muscle wastage.
The Osteotomies were sadly unsuccessful. I remained in the exact same pain I was in before. I felt like I had gone through it all for nothing. I was in a very low place. I no longer had quality of life, my pain medication had increased to high levels of morphine as well as all the side effects that came with it and I had to reduce my hours at work because I could no longer keep up the pace. After more investigation, an MRI showed arthritis throughout the joints. Too much damage had been done.
I was referred to an Arthroplasty (Joint Replacement) Consultant. Although I felt as though I went to the Osteotomies for nothing, my Consultant said that they had given him more surface area to work with for the hip replacement.
December 2015 – Right Total Hip Replacement.
It took me a while to feel any difference in pain levels. After the post-op pain had worn off, I noticed how much more stable this hip was, especially in comparison to the other. I’d never experienced this in my whole life. However, I was still in a lot of pain and I didn’t understand why. As it turned out, it was the pain from the left hip, I was feeling a lot of transference of pain from that hip, across my pelvis.
January 2017 – Left Hardware removed and Left Total Hip Replacement.
Within two weeks of this operation, I could already feel the difference. For the first time in 15 years, I was out of pain. Two days after the surgery I was off morphine for the first time in years.
Hip Dysplasia on occasion comes hand-in-hand with other complications/conditions. Mine is Osteoporosis. This was found ‘by accident’ by my consultant during the surgery of my first Osteotomy. “Your bones seemed a little soft when I was cutting through them… go back to your GP, it needs investigating”. As a result, I have had some ‘non-union’ in my pelvis after the surgeries (broken bones not healing or ‘knitting’ back together, so remaining with a break in them).
You can clearly see them in this X-ray .
I used to be able to feel them moving and crunching together. I also used to get quite a bit of pain from them. Now they’re doing quite well and seem to be a lot more ‘solid’ – no more movement. Which I am grateful for, it would have just meant more surgery!
After both the hip replacements, I’m doing very well. I have been left with a lot of muscle atrophy from the many surgeries, however with continued hard work I know I can get back to a point whereby it shouldn’t cause me any further problems. Nobody likes bingo wings where their hamstrings should be! It’s now all about ‘maintenance’. Unfortunately, there are popular misconceptions that after a hip replacement, everything will be dandy again without there being any work involved. It is easy to forget that to keep it that way, you must keep the surrounding muscles healthy and strong… like giving a car a regular service. By having a hip replacement, you’re making a lifetime commitment – the better you treat ‘it’, the better it treats you! Meaning less complications. That might seem a bit extreme, maybe even sound like too much hard work, but think of the alternative; to me, my life was just slipping by. I couldn’t even call it a life anymore. No quality there whatsoever and I had to sacrifice so much. So, I know which I’d prefer. I’ve been given a second chance, a new lease of life, something I’ve wished for, longed for, for quite some time. At one point, I never thought I’d ever have that again.
I feel very lucky now. I’m so very appreciative of all that I have. I want to make a difference for all those going through what I went through; the mistakes I made, the struggles, the choices, feeling alone, overwhelmed, depressed, frightened, hopeless, the pain and all the hard work – I hope that I can pass on all that I learned (sometimes the hard way!), to give support to others in a way I wished I’d had and make it easier for those Living with Hip Dysplasia.