Paige’s Story

When I was born in February 2000. I was checked for hip dysplasia, but unfortunately for me, missing the signs of this crucial test meant a life of pain and discomfort and a very long road to recovery. My mum had a good pregnancy with me, and not once was it thought it was a risk for any disability- including hip dysplasia. Growing up I always met aging milestones. I was crawling and walking at the right ages, so there were no red lights at all.

As I got older and my body got bigger, my toes started to point externally, and I walked with a wobble, but nothing we thought anything of. All of my family used to laugh and joke about me walking this way, so it was brushed off as ‘normal’ or ‘just me’.

Since a little girl I’ve always had a special place in my heart for animals. At the age of 5 I started horse riding lessons at a local riding school, but unfortunatel,y due to loss of interest I stopped. Fast forward years later, my parents bought me a pony for my 10th birthday present because I couldn’t stick with any other hobby. At the age of 12 years old we went to a local show jumping competition. This day was the day that started my journey to this present day.

I was doing great going around the course of jumps until the pony took off with me heading towards a jump, stopped dead in its tracks, and I flew over its head, landed straight on the jump on my back, and hit my head on the jump wing, falling unconscious. As daft as it sounds, I was carried out of the ring by a couple of adults and placed on a bench, being a young equestrian it’s in the nature to avoid hospitals, which was exactly what I did, and never went to get checked out, which was the biggest mistake I made.

Within a couple of weeks, I began to get major lower right back pain, so I booked an appointment at my GP’s surgery. This was when I was told to just ‘stop riding’. I wish it was as easy as that! I of course didn’t take any notice of the advice given to me because it was literally all that I did. I’d just got a new competition horse, and I wasn’t going to let the accident stop me from doing what I love! Therefore, I carried on.

Through the years I fell off time and time again, but I just got on with it. I went back to see the doctor continuously to get somebody to listen to me, but they never did. In May 2017, my horse of a lifetime, Finn, was tragically put to sleep after 5 amazing years together. After 7 years of riding, this is when I stopped completely.

Months after losing Finn, my back pain gradually got worse to the point where my back/hips would ’lock’ and my mum would have to come and carefully move me which would be agonizing for me. So off I went to the GP’s office again. This time they couldn’t tell me to stop riding, because I hadn’t ridden in months. Thankfully, I saw a doctor I hadn’t seen before, and she listened to me, did some physical tests, prescribed me painkillers for the pain, and sent me to try physio. After the pain got even worse with physio, she sent me for an x-ray at the local walk in centre, and referred me to the specialists at the hospital. Finally, I was getting somewhere to figure out what is causing my pain!

It wasn’t long after that I was seen by the consultant within the paediatric orthopaedic team at the hospital and she was straight on the problem without hesitation. She did a thorough examination, and said that the pain in my back was radiating from my hips after what I’d described to her! At the appointment she gave me a steroid injection into my back to see if that would provide me with any relief at all and made me an appointment to go back to see her. The steroid injection didn’t work, so I was sent for an MRI scan of my lumbar spine and both hips. During the time I was having all these hospital, physio and doctor’s appointments. I was in my second year of college, and trying to keep up with the work I was missing was difficult, but thankfully I passed my course thanks to the help of the college lecturers!

On the way back to the hospital for my appointment, me and my mum were joking around and weren’t really taking ourselves seriously, so she was saying things like ‘I bet she says there’s nothing wrong with you’ as a laugh.

Little did we know, the consultant would tell us that at the age of 17 I have hip dysplasia and femoral head snapping syndrome, as well as right and left sided anteversion with left femoral neck retroversion, and I needed surgery to fix it. As well as my femurs needing to be operated on, I was warned that my tibias may need doing at the same time as my tibial torsion wasn’t normal either. Depending on the results from the femoral osteotomy, however they wouldn’t know if to go ahead with a tibial osteotomy until I was in theatre. So, from this point I was sent for many scans to prepare for my operations. We decided to do the right side first as this was the most painful. Before both surgeries I had pre-op appointments to check my heath etc.

After diagnosis, I got a place on a university course which was within the college I attended, but unfortunately due to the time I was missing there again, and the workload was much more than college. It was mutually agreed with much hesitation between me and the lecturers that it would be best to drop out, so that was the end of that.

Whilst waiting for surgery, I came across a horse that needed a new home. He was in a bad way and I felt the need to give him a home where he is cared for. So, I bought him- his name is Bailey.

On 14th November 2018 at the age of 18, I had my first surgery, right sided de-rotational femoral osteotomy fixed with a plate and 8 screws. The surgery itself took 3 hours, and I spent 2 hours in recovery before being wheeled back to the ward. I was given a morphine pump to press every 5 minutes. This was allowed for 2 days and then I was switched to oral morphine, tramadol and paracetamol. My sickness and nausea were bad, but it was managed with frequent anti-sickness medication. I spent 5 nights in the hospital before returning home.

I didn’t get referred for physio for this surgery, but I managed quite well by myself. I started walking unaided 3 months after surgery, once I was walking better, I was put on the list for my left femoral osteotomy.

Bailey helped massively with my recovery, and after 13 weeks of surgery I was back riding much to the displeasure of my parents!

Unfortunately, whilst waiting for my left osteotomy I twisted funny which caused a ‘pop’ in my right hip. I went to A&E because of the pain and they sent me to fracture clinic where they said my IT Band had been snapped completely by the plate in my leg. Therefore, I was sent back to see my surgeon who made the decision that she would remove the plate at the same time as my left osteotomy. Over the course of the months, my leg started to develop a lump/ swelling under the skin below the incision, my surgeon said this is another problem with the plate and that it was a reaction to it. So, I was bumped up the waiting list.

On 21st October 2019, I went in for my second surgery. This time my left femoral osteotomy fixed with a rod and 3 locking screws, with right hardware removal. I was taken down to theatres, and went into the prep room next to the operating room. Here I was given an epidural which numbed both of my legs completely from halfway up my back, all the way down to my toes. After that, I was put to sleep.

This surgery was 3.5 hours long, and I spent 4 hours in recovery because they were struggling to get my pain under control, as well as trying to stop me being sick everywhere. They gave me an anti-sickness tablet to start off with but I carried on vomiting loads, so they switched to IV which didn’t touch me. So the last resort was getting the anaesthetist to come and give me an injection in my upper leg, which thankfully worked! Because I had an epidural the anaesthetist didn’t give me the morphine pump until it had worn off but told me to ask for it and I’d be attached to it straight away. Back on the normal ward I was refused my morphine pump by the ward nurses, so my pain was unbearable. They decided to give IV paracetamol and oramorph (which did not help at all), so I became increasingly unsettled.

After only 3 nights I was discharged home. I regret not speaking up and telling them I don’t think I was ready to go, but with the help of my parents I felt comfortable at home, although my pain wasn’t managed at all. 10 days after surgery, I had my first physio session. My physios name is Emily. She gave me exercises to do to get my range of movement back in my knee as that wouldn’t bend at all. Week by week I started getting stronger and 4 months after surgery I started walking unaided again although with a Trendelenburg gait. I cannot thank Emily enough for the effort she put in each week at my physio appointments!

During my recovery for surgery number 2, my dad wanted me getting out into the world because for my first surgery I became so withdrawn and didn’t do anything or go anywhere. So what’s the best thing to do apart from spend time with the horses you ask? That would be going to watch Leeds United’s matches- either home or away! 

I find it that if your doing something you enjoy, even if it’s just watching, it takes away the pain for just that moment. I travelled up and down the country watching Leeds play – from them playing teams like Bristol City, Millwall, Wigan, Reading and Huddersfield at the home comfort of Elland Road, to all the way down in London at Arsenal for the FA cup tournament and many other away games in between including QPR and Brentford. All the long hours travelling was painful but I’d rather be in pain doing something I enjoy, than in pain sitting at home feeling sorry for myself!

Paige and Kalvin Phillips

Each game we went to, I was humbled by how mellow all the fans were. Not once did I feel unsafe, and, for a big bunch of men and women attending a football match, that normally would be pretty rowdy for a girl on crutches with a broken hip/femur. I was treated amazingly by each stadiums stewards who moved me to the safeness of the disabled stands out of the hustle and bustle of the following Leeds supporters. Although my dad wasn’t happy that he couldn’t be a little boy again to sing as loud as he could for the team we all love! 

Unfortunately, I’m still getting pain from my right hip like it was before surgery if not worse, and my left knee has become problematic. I’m unsure if this is because of the tibial torsion or not. I went back to my surgeon in January, and I told her about the pain in both legs, and she told me to improve my gait more with the physio. She gave me a cortisone injection with anaesthetic in my right hip she would see me back in 3 months (April). However, due to the Covid-19 pandemic and the UK lockdown I haven’t been back to see her. I’m hoping to get some answers of why my pain is how bad it is and what the next steps forward are in my treatment.

I was very unsure about writing and sharing my story about my journey with Hip Dysplasia as many people would think it’s not that big of a deal unlike some disabilities and illnesses. However, being diagnosed at 17 years old and what should have been some of the ‘best years’ of my life, turned out to be a very grueling time.

It was challenging on my parents because they had to care for me like they did when I was a child doing pretty much everything for me during both recoveries so far. Although I don’t think they, like very many people, understand the pain and frustration that comes with the hip dysplasia, and the fact that for me and many people like me, it’s quite a big deal mentally and physically that people who don’t go through it wouldn’t understand.

Now at 20 years old, I have very limited number of friends because I refuse to go anywhere such as clubbing, festivals etc. The things that people my age take for granted without knowing it such as being able to get in and out of a car without looking like a fish that’s been taken out of water, or walking 100 metres down the road without pain every day. I understand I don’t, and never will have the ‘supermodel’ legs, and now to add to that, I have my scars to adapt to.

People have scars in many unexpected places, like a roadmap to personal histories. Something I was afraid to show, but I’m now learning to wear and be proud to wear. I don’t care what anyone else sees when they look at me, my body has fought and won battles others can’t imagine. My gratitude runs deeper than any judgement or outsider’s opinion, remember, the strongest among us aren’t the ones who show strength in front of us, is the ones who win battles we know nothing about.

Thanks for reading!

Paige, Staffordshire, UK.