I’ve been wanting to write about my Scoliosis journey for some time now but never knew where to start, partly because some of my memories have faded over the years. Nevertheless, expressing my feelings on this subject is a cathartic process I feel compelled to do.
Nowadays, there is so much information and support available to anyone who has been diagnosed with Scoliosis, from Facebook groups, meetups, parent groups and support via the Scoliosis charity. It wasn’t like that in 1995.
My journey began a couple of years prior in 1993 when on a family holiday to India my dad noticed in all the pictures my body was lop sided, one shoulder being higher than the other. He couldn’t understand why I was posing in this way and I was frustrated with being told to ‘stand properly’. Upon return my dad being rightly concerned took me to see the GP. I was told on my first appointment that I probably had Scoliosis and at hearing this my dad wanted a second opinion. We went to see a private Doctor who indeed confirmed the diagnosis by the GP as Scoliosis.
What is Scoliosis? Scoliosis is when the spine twists and curves to the side. Although many people may not have heard of this, around 3 to 4 children in every 1000 need specialist supervision. Sometimes the curvature can be treated by wearing a brace but if discovered a little later where the degree of curve is quite severe (above 40-50 degree), surgery is the most suitable and only option.
Upon being told I would require surgery, I actually don’t recall being scared since I was not experiencing any discomfort or change to my daily life. The same couldn’t be said for my parents who were beside themselves with worry and asking why has this happen to their child. We were put on to the NHS waiting list and luckily for me the date for my surgery was 8th August 1995, just after I had sat my GCSE’s.
I remember turning up to The Royal National Orthopaedic Hospital with my family and quite honestly feeling blasé about the whole thing. Back then there was no internet or Google to find more information, you just trusted the Doctor’s and I think because of this naivety I was in good spirits. I remember having my MRI scan and it being a very pleasant experience with me falling asleep! I also recall being taken down to surgery and counting back from 10 and reaching 7 before falling asleep.
I was in surgery for 8 hours while the Doctor’s performed a spinal fusion. The purpose of this is to allow the bones of the spine to grow together (using bone graft) to become a solid bone that can no longer twist. Metal rods, two in my case, were fixed onto the spine using screws and hooks to pull it into a corrected position and to hold it there.
I lost a substantial amount of blood and required a blood transfusion. This is how I know I am blood group B+ and regularly donated blood to give back (until I wasn’t allowed to due to the very fact of having had a transfusion). I was in the High Dependency ward for a few days before being transferred to the Children’s ward. I remember the morphine and the PCA which I thought was brilliant! One thing that sticks in my memory is waking up from the surgery and the nurse telling me I had beautifully expressive eyes. Funny how compliments like that stay with you.
As it was the Summer holidays I remember my cousins and friends coming to visit me. I also recall not being able to sleep during the night as I usually nodded off during the day. My Sony Walkman was my best friend. My cousins told me whilst I was in surgery my parents sat in the car and my dad wept. Only now that I am a parent myself (and my daughter broke her arm and required surgery) do I realise what he and my mum must have gone through. As a teenager you are quite resilient and dare I say fearless. I don’t remember being scared at all, I just took it all in my stride.
After being bed ridden for the best part of 10 days I remember the first time I stood up. Of course I felt very light headed but the good news was I had grown half an inch. If someone asks me today how tall I am, I say “5 foot, 4 and a half inches” and that half an inch is so important to me! I also had many breathing tests to measure my lung capacity because in some cases depending on the curvature the rib cage and lung size can be affected.
Over the next few days I began to walk more and more until I could go to the toilet on my own. I had a cast made especially for me (my dad had to add padded faux fur on the inside later to make it more comfortable). I was discharged two weeks after I had arrived.
For the next year I wore the back brace which was pretty awful looking to be honest. I had to wear big baggy t-shirts above the brace and I was grateful that I stayed on at sixth form where I knew everyone and my friends were very supportive.
25 years later and the rods are a part of me. I like to think they are titanium but in reality they’re probably stainless steel! Over the past 5 years or so I have had x-rays, not because of pain but the top part of one of the rods is definitely more prominent than before. They use slightly different procedures these days and it was suggested that the rod may have become ‘unhooked’ but there is nothing they can do about it. Removal of the rods is rare since it would make for a complicated surgery with bone having grown around it.
I wouldn’t say it has limited me in life but there are certainly times, such as Yoga or Pilates or even the breast stroke when I am aware of the protruding shoulder blade or the two rods. The only thing it stopped me doing was skydiving about 15 years ago while I was travelling around New Zealand. Even then it was my decision but they were concerned about the impact of opening the parachute and I decided I didn’t want to take the risk.
I was also told I would more than likely have to have C-sections when thinking of starting a family. In fact, I have had two natural births with no complications. I refused the option of an epidural due to possible side effects of back pain and instead opted for gas and air.
As I was writing this I asked my Dad if there were any photos of me either from hospital or wearing the brace. I should add at this point my Dad was and still is a keen amateur photographer. But he said at that time in their lives they were so upset with what was happening to their child that the thought of documenting it was too painful. Fair enough.
The cause of scoliosis is unknown. There is nothing my parents could have done to prevent the scoliosis. However due to modern bracing technology, early detection is important. Research has shown a direct link between age of detection and the outcomes achievable.
Signs of Scoliosis include a visibly curved spine, leaning to one side, uneven shoulders, clothes not fitting well and sometimes ribs sticking out on one side.
I’ve had my moments of hating my body and being uncomfortable in my own skin but the truth is the scars and rods are a part of me, they make up who I am. They tell my story but they do not define me.
“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”
If you or anyone you know want support or more information contact the Scoliosis Association UK (if obviously you’re based in the UK).