In the lead up to my revision hip replacement, combined with June being hip dysplasia awareness month, it seems appropriate to share a little more of my history.
However, I do this with reluctance. In some ways I see it as irrelevant and perhaps not a positive one for others just learning of their child’s dysplasia. So please read this knowing the experiences people encounter now are, on the whole, much more positive with more successful treatment. This is just one person’s experience.
In truth, I have struggled to write the following. It’s a story I’ve told countless times but perhaps it’s to do with my present mood as I approach the next operation, or it’s the process of writing it, rather than narrating. So if this is a little dry or melancholy, I apologise to anyone who wishes to try to wade through it!
I was born as ‘queried’ hip dysplasia, having ‘clicky hips’ as it was often referred to. Like my sister two years before me, I was put into double nappies and later reassessed. At this stage she was fortunately given the all clear but I was put into a Von Rosen Splint. I’ve been told that in 1% of cases. the Von Rosen splint can lead to avascular necrosis. (Current evidence suggests they are safe and effective.)
I spent a number of months in the splint – 6, I think. Interestingly, only about 1 photo exists of me in the splint. This is something of a blessing though as my likeness to Winston Churchill was striking! I was given the all clear, though it was noted that there was still a query over one of my hips.
Aged 4 1/2 and I complain, ‘Mummy, I can’t come downstairs, I’ve got toothache in my hips’.
X-rays followed and a referral to an orthopaedic consultant at my local hospital. I was fortunate that this was a superb consultant who remains a source of support to this day. The x-rays were referred for a second opinion on treatment because of the severity of the bilateral dysplasia (worse in the left, as is often the case).
Aged 5, I had months with waist to ankle splints and then open surgery consisting of bilateral pelvic (Salter) osteotomies followed later with a left femoral osteotomy. Plus more months of waist to ankle plasters. It is believed that avascular necrosis had been present, creating developmental dysplasia of the hips.
My adolescence and childhood was spent on and off crutches and in and out of hospital, with traction, bed rest, etc. The nursing staff knew me well!
Aged 13 I had a second femoral osteotomy, this time on the right hip. At least now I was symmetrical for scars! I remember the night before the operation, looking at the side of my hip and thinking it was the last time I would see it without a scar.
I remember waking up to metalwork in a specimen pot on the cabinet next to me. I was about 6 then. When I was 13/14 and the metalwork was removed, I made a point of asking to keep it. Now it was a collection! I asked again when the next lot was removed, aged 22. I even asked if I could keep the hip replacement when they remove it next month, but sadly not!
Aged 15-17 ish, I had two good years. For the first time in my life I went a lengthy period of time without pain or using crutches. I met my first boyfriend and to him my dodgy hips were the stuff of metalwork in specimen pots, old healed scars and stories. When my family moved into a 3 storey house, he asked if I would have a room on the top floor. I said, ‘no, when my hips are bad I won’t be able to get up there’. He thought I was being the negative and pessimistic soul I so often was (am?!).
However, aged 18 the pain began again. Mostly I recall that experience with fear. Before those two years, the pain, crutches, school absences, etc. was just part of my life. Not easy or enjoyable and it is only much more recently that I have fully come to understand the multifaceted impacts on my life. However, I knew no different. I didn’t remember not having pain and intermittent use of crutches. Now I did.
Now I’d found that I’d got through an academic year without a single day’s absence. This after previously missing so much schooling that one year I was absent an entire term. I’d also found that it made a difference to my abilities. Clearly this link is not rocket science but it was something of a revelation to me as I’d always felt so stupid compared to my sister and peers. Now I began to see that perhaps I had more ability than I’d previously thought.
At 18 I was referred to a consultant at a specialist orthopaedic hospital. Cue bilateral femoral osteotomies and a forced gap year from my degree. Aged 20, it was found that a year after surgery my left hip still hadn’t healed and required a bone graft. I was taken in as an ’emergency’ in the Easter holidays of my second year at Uni to have this carried out. I was discharged on the day of my 21st birthday! I returned to Uni non-weight bearing and determined to complete the academic year, 200 miles away from home. I’m stubborn!
Ultimately the surgery wasn’t helpful and the decision was made (by me and my surgeon) to proceed with total hip replacements. These were made bespoke using CAD-CAM technology (computer aided design and manufacture) and are ceramic. The reasoning was that bespoke would be more appropriate and successful given the amount of surgery I’d had done previously – it would be tricky to get an off the shelf to fit successfully. The ceramic surfaces wear at a much slower rate than metal. This was important given my age. So, aged 22 the right hip was replaced and the left was done on the day of my 23rd birthday. I’d always said I’d like a new hip for my birthday… thank you NHS!
15 years later… will follow separately…
My Chronic Pain 