Holly Rock hiked the 100 Mile South Downs Way to fundraise for SAUK. Holly raised an amazing £2075. SAUK is very grateful for Holly’s fundraising efforts, but we commend her in particular for the way that she is speaking up about scoliosis within her community. The following is Holly’s account of her scoliosis journey, 4 years post-fusion.
My story from the beginning (age 13)
Two people very close to my mum approached her within the same week saying that my hips were wonky. They said you could see this in how I walked and that my mum should get me seen by the doctors. My mum then phoned the doctors straight away to get me an emergency appointment. That following Monday I had an appointment at my local doctor’s surgery and was told to do some stretches and poses to assess what may be wrong. At first the doctors weren’t sure what exactly was wrong; however, they could clearly see my spine wasn’t straight. They got my mum to run her hand down my spine and she then knew there was a problem, something she had never noticed before. Within no time I was then referred to St. Heliers Hospital in Epsom. I was then looked after by an orthopaedic surgeon who advised me what would happen next. At this time, my curvature was at 37 degrees.
The back brace (age 14)
They started with the non-surgical route, which I was glad of because the thought of surgery absolutely petrified me, and I would have done anything to avoid it. I was measured for the brace and the measurements were then sent off to America for the brace to be made, which took roughly 4 weeks. When it arrived back in the UK, I had to go back to the hospital for it to then be cut into my physical body shape. The back brace was an off white colour and had a hard plastic coating with three fabric straps at the back, like a corset, to pull you in super tight. This is definitely one of the saddest memories of my journey to this day. I had to wear the brace for 23 hours a day and was only allowed to take it off to wash and do sports at school. Wearing the brace at school was hard since I was the only student with scoliosis and as you can imagine people weren’t all that nice. It was so uncomfortable at first, especially at night, I used to cry my eyes out in pain, struggling to breathe and not being able to sleep and just not feeling comfortable, which is all completely normal but just not the normal for me. This was also very hard for my mum, she had to pull my straps tight and help me into the brace as I wasn’t able to do this by myself. um brought me seamless vests for under my brace as it used to rub all the time and make my skin very sensitive. I knew in the long run that as long as I kept wearing it, it would make things better. I had regular check-ups and was just told to keep wearing the brace until they thought it was safe to be able to stop wearing it. I was reviewed a few years later to see if my spine had stayed the same and not curved anymore, I believe I had just turned 17 at this point. I was told that I no longer needed to wear the brace as my spine had fused together and I won’t grow anymore. I had an X-ray which showed the brace had brought my spine from 37 degrees to 23 degrees. I couldn’t believe it, all that time and heartache with the brace had paid off. The brace had become a part of me at that point. Mum was over the moon that all that time wearing the brace had really made a difference. So, if you’re reading this and you’re currently wearing a brace, please wear it as much as you can.
Discharged too early ( age 20 )
Unfortunately for me, a few years on I started having really bad knots in my shoulders. At first I thought maybe it was just stress from work and general life things; however mum pushed me to get checked by the doctors considering the journey I had already been on with my spine. They instantly referred me straight to a physio, which I did for a few weeks in my local town before they then referred me back to the hospital. I felt like it was happening all over again, and I was re-living my 13 year old self. I was then referred to the William Harvey Hospital in Ashford and I was assigned as a patient to a surgeon. I attended the appointment alone as my mum was away and we just really hoped for the best and didn’t think anything major was going to happen. At the appointment the surgeon clarified that my spine had moved but he wanted to give it a year to monitor how it was progressing. This was hard to hear, especially now that needed to see what the next year would hold. Over that year I didn’t have any other problems other than the knots so I was praying that all would be okay, and an operation wouldn’t be needed. I had never had an operation before but the thought of having such major surgery frightened me.
One year on ( age 22 )
I had many X-rays, MRI’s, and examinations over that year and was eventually told that my spine had gone over the 45 degree mark, which meant I would be having the operation. This all came as a horrible shock to me and mum because I had worked so hard to wear the brace consistently and had been told just years earlier that I was in the clear and my spine had fused. You of course have the choice to have surgery or not but with how much my spine had moved, I knew there was a high probability that by the time I was 40 I would be really struggling with this condition and my mobility might be affected. Even though I had a choice, I felt like I didn’t. I was just so scared of all the possibilities and the problems I could now face. I almost started to feel angry at myself that I didn’t just have it done at age 14. Part of me didn’t want the operation because I should have never of been let go by the previous hospital and I was scared something would go wrong but after much discussion, I booked in for the operation. There was a waiting list, I believe around 6 months, so in my mind this was my last 6 months of freedom before everything would come crashing down. I was petrified and thinking the worst. I have really bad anxiety, and for those who understand what anxiety is like, it sent mine through the roof. In the back of my mind, I knew this operation was for the best but I just didn’t want to believe it was actually happening.
Date confirmed – Tuesday 8th May 2018, Guys Hospital London
After sleepless nights and pre-op assessments, the day had arrived. Me and mum stayed the night before in the hospital, not that we slept. I was the first patient for the morning. My surgeon came up to the ward to get me and wheeled me down to what I call the fridge. Correct term would be pre-op area. Since I had never been put to sleep before, I didn’t really know what to expect but I just remember it being so light, with bright white walls and lots of doctors and nurses in this small room. I was lucky enough to have my mum in there with me, I think because I wouldn’t stop crying, mums are the best to have by your side. The doctors and nurses showed me there was nothing to worry about and were so friendly, just chatting away to me, I didn’t even feel the needle going into my arm. My body was clearly having none of it though, the dosage they had given me only made me super drowsy as I was trying to subconsciously fight off the drugs, so in the end they had to put a gas mask on me to get me to sleep. I was then in surgery for roughly 4 hours.
When I woke up all I remember feeling was just tired and nothing else. I was on so many drugs I didn’t feel any pain. After being wheeled back to the ward, mum was waiting for me, but I can’t really remember the rest of that day, it was such a blur. The next morning my surgeon came round and got me out of bed, I managed to take two steps and that was enough. The pain was excruciating, I think some of the hard drugs had worn off, I had massive padded sticky pads covering my spine as I could only lie on my back. I had a morphine button which I clicked every 5 minutes, so that relieved the pain a little. I couldn’t do anything by myself, I had to be bed bathed, and if I needed the toilet a nurse had to help me get out of bed, which could take me 10 minutes just to sit up. I couldn’t lift anything other than my water bottle. I knew things were going to be tough, but I guess you forget that you use your back for everything and any slight movement cause different pains. I was lucky to have my own room in the hospital and was looked after day and night by the lovely staff at Guys Hospital. Nobody was allowed to stay over with me so once visiting hours were over, I felt like I was on my own. I didn’t really sleep and when I couldn’t I would call my grandad and he would just try and calm me down and put me at ease. I was in hospital for a total of 5 days. I was so determined to get out, like most people I’m not really a fan of hospitals. My surgeon checked on me every day (at 7am to be precise) and got me out of bed each time because he wanted to monitor my progress. I will always remember a nurse coming round in the morning to inject something in my tummy, which felt horrible. I guess the horrible parts always stay with you. I had physiotherapists who would also come and visit me once or twice a day which I loved – they were amazing and just made the days go more quickly. They would monitor me walking (very slowly) to the toilet and back, which to do that walk now would take me about 5 seconds but at the time felt like a lifetime. They also helped me practice walking up and down steps again. Before they were happy with me leaving, I had to be able to walk to the toilet and back by myself and to the end of the ward and back. Nothing was stopping me from achieving this. Once the 5 days were up and my surgeon was happy, I was discharged from hospital and was allowed to go home. I was prescribed some medications which mum kept a diary of as there were so many. I believe I took around 22 tablets per day. Mum took 3 months off work and she cared for me 24 hours a day. Big thank you to my mum who was my lifesaver. Then it was onto the long road of recovery, even now I feel like I’m still recovering, but I am forever grateful for my surgeon and the whole team at Guys Hospital who couldn’t have looked after me any better. I am so glad I had the operation and hopefully I am able to inspire others to not be afraid. It really has made me who I am today.
Post challenge reflections
I think it’s important that people know what I went through and not to sugar coat the pain and the general day to day struggles. I have had so many people reach out to me saying that they can’t believe the journey I went on and am still going through. The support I’ve had has been so overwhelming, it’s amazing how generous people have been. In life I always love to challenge myself and what better way to do that than a 100 mile hike across the beautiful South Downs way… in four days! I walked from Eastbourne right the way across to Winchester, which just looking back now seems impossible, especially in the timescale. I was really concerned with how my back would cope with the long days and a rucksack on my back, but surprisingly I managed really well and just made sure I used my gel as and when I needed it. It wasn’t just physically tough, of course your legs start to ache and my knees were hurting from the down hill yomps, the blisters on your feet, but also mentally challenging. The thought of having to get up day after day and walk at least 25 miles was so hard but the amount of support and messages I had from those around me really kept me going and pushed me on. I had my Mum, dad and boyfriend completing the walk with me and I can honestly say I’m so proud of all of us for completing it. What an amazing achievement and the relief seeing the finish line. So overwhelmed by all of the people who donated so generously to SAUK, and amazing £2075!! Now onto the next challenge, look out Snowdon!