Elise struggled with femoral retroversion, also known as hip retroversion which is a condition related to hip dysplasia. This is the story of her diagnosis, operations and recovery to date:
Hi I’m Elise and I live in Northern Ireland. I’ve recently turned 18 and I want to share my experience of femoral retroversion.
I was always very active as a child; my main passion was circus school. I absolutely loved it; I was there most weeks for 7 years. I loved learning tricks on the static trapeze, aerial hoop and hula hoop: but I could never juggle! I always knew my legs were different as I could never get my ankles to touch, my knees and feet were turned outwards, and I struggled to sit on my knees but we brushed it off as we thought that was just the way I was.
Gradually almost joint by joint I started to develop pain and injuries: first in my shoulder, then my elbows, wrists, hips, knees and ankles. I saw lots of different specialists and had numerous scans and x-rays but my pain was put down to hypermobility and I was referred to physio. But the pain in my hips and legs worsened and I had to stop doing PE in school, and my hips had started to clunk every few steps, until it progressed to the point where it clunked every time, I took a step or put any weight through my leg.
The pain was getting unbearable: you could physically see the clunk through my clothes and my skin shuddering, you could hear the clunk, and you could feel the force and vibration from the clunk through the floor. My back and legs felt like they were being rubbed raw and I couldn’t walk very far at all, and couldn’t stand or sit for long periods of time.
I had months of physiotherapy, weekly Pilates classes and I tried taking muscle relaxers and even acupuncture, but my pain was just increasing and the clunking was getting worse. The pain got so bad I couldn’t attend school in person anymore, so I ended up working from home. As well as being extremely painful, it was embarrassing too, I would get stared at, some people were freaked out so much they couldn’t walk near me and so many people would ask ‘what’s that noise?’. I was diagnosed with snapping hip syndrome, but I knew it was more than that. When my back pain worsened and I started to get numbness down my legs I saw my GP who referred me to a back specialist, and I had an MRI scan of my spine. The back specialist said I had mild scoliosis but it didn’t need treatment so I was referred to a hip specialist and I waited 5 months for my first appointment.
After my first appointment, I was sent for a CT scan from the top of my pelvis to the tips of my toes. At this point the pandemic had hit, so I waited 3 months for the results. Our house phone rang and I knew it was the hospital with bad news because my dad’s face dropped. That day on the 20th May 2020 I was diagnosed with femoral retroversion over the phone, and was told that I needed a femoral derotational osteotomy on each leg. That was one of the hardest days, trying to process that I finally had an answer after living in chronic pain for so long, but I was terrified about the surgery.
Steps volunteer Natalie has been amazing and helped me to cope through everything. 11 months after being diagnosed I finally had my first surgery in April 2021 and I was in hospital for 6 days. I’m not going to lie, the pain was awful, but I managed to walk with a Zimmer frame the next day and was walking indoors unaided within 7 weeks. My recovery was going well but I was still in pain as my right leg was still clunking. Unfortunately, 3 months after the surgery, I had an ovarian cyst that ruptured and I had to get more surgery, so that stalled my recovery for a few weeks, but my femur finally healed in 5 months.
At the end of November 2021, I had my second femoral osteotomy on my right leg. I had a nerve block catheter put into my back to numb my leg before the anaesthetic as the pain was very intense the last time. A nerve block catheter is a quick injection and it’s covered with a dressing. However, it quickly wore off and I was in a lot of pain again but I still managed to get up on the Zimmer frame and crutches and I got home after 7 days, and I even made it to my school formal the day after I got home, fashionably late by 2 hours!
I have had lots of physiotherapy after both surgeries: I was given an 18-page booklet of physio exercises to do 10 times each, twice a day! I stuck with the exercises and I noticed a huge difference, I was able to lift my leg into bed on my own or sit down without help, and they really helped me to prepare for relearning how to walk again. It’s quite difficult when you actually have to think about walking: lifting your knee up, striking your heel and rolling through your feet, it takes a while to get your head around, but my walking is gradually starting to improve and I’m having to think about it less. If you’re getting this surgery or any type of surgery, I would highly recommend investing in a pair of socks with grips on the bottom!
Having to recover from 2 major surgeries and study for my A levels has been challenging, as I have had a lot of work to catch up on but I’ve also had to listen to my body and rest when I need to. It was difficult living with my condition as I got told that my walking was ‘normal’ when it clearly wasn’t and people didn’t get it, they’d say, ‘you’re still sore? or say I complained too much.
Looking at the positives of my experience, I am much more self-confident and I’m learning to love my scars: I have a 21 cm scar and a 6-inch scar the shape of a lightning bolt, which my wee nephew says is ‘cool’. I found strength and bravery within me that I didn’t know I had and now I can use my experience to help support others going through a similar thing. I have good days and bad days but even though I had to get both my femurs broken to walk more normally, things are looking brighter. I have applied to study physiotherapy at university, as my experience has inspired me to work with and help others going through similar experiences.