the story of my scar

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This is the story of my scar. I am going to delve deeper into my spinal fusion to treat scoliosis and my recovery, rather than my atypical diagnosis (see previous blog post for this).

When I was going to Edinburgh in April 2016 to meet my surgeon I was not expecting him to tell me that my condition was so severe that I needed major surgery. I was fully expecting to be told that I would just have to attend regular check-ups, the “wait and watch” approach. 

I was really upset at the thought of this surgery being in two months. This was a point in my life that my anxiety was super high, I was constantly thinking about it. I would say I got majorly upset about it at least once a week, telling my mum how scared I was that I could die on the table or be paralysed for the rest of my life. No amount of reassurance was going to make me think that I was going to be fine. After all, even if I wasn’t going to die or be paralysed I had been made aware of the difficult recovery.

In my case, I don’t think that I had prepared myself enough for the aftermath of my surgery. For one, I wasn’t told about having to wear a brace until my pre-op appointment which was a couple of days before the surgery. This meant I did not have enough time to familiarise myself with the idea of wearing it for six to twelve months. I then started feeling more anxious about the jacket than the surgery. I was a fifteen year old girl, the last thing I wanted was to wear a cast covering half of my body for a year. I was so scared of what people would say and think.

The day after my surgery I felt so useless because I wasn’t even able to sit up, so when the nurses came round to help me sit up I was asking to try walking but I was jumping the gun too quickly. I think it was day three or four that I was taken for my first steps. What I didn’t realise was how debilitated I would actually be, I hadn’t really thought of the concept of having to have someone with me all the time, someone holding me up while I walked, even someone washing me in the shower. 

The recovery obviously had a physical effect on me, but it also impacted my mental health. I was irritable throughout my ten days in the hospital because I just wanted to go home and I kept questioning why I had gone through with this surgery in the first place. Because after all, this was my decision and I chose to go through with it. 

I thought I would feel much better when I got home but I was wrong. I got home and realised how much I was unable to do myself. I had already done all the monumental things in the hospital like walking, so now it was just continuing with life. But this was more difficult than I thought, I saw people my age going and doing things because it was summer, meanwhile I was stuck in my bed and the furthest I went was the local supermarket. 

Additionally, I was wearing this brace/cast. It took me a while to recognise the positive aspects of this “jacket” as we call it because I was so focused on how it looked and what people were thinking when they saw it. The brace really made me feel a lot more confident physically, I felt secure as I knew that there was something protecting my back so I wasn’t so terrified of being in crowds where my back could be knocked. But I never got used to the stares from people. It was obviously unusual, you don’t typically see someone walking around with a removable cast covering their upper body. There was a fair amount of time that I would have the brace on show, originally this was because it was summer and it was hot so I wouldn’t be wearing a hoodie on top of the brace. But then I realised that people became more cautious when they could see my brace, so if I knew I was going to be in a busy environment I typically would have it on show. 

The brace was easy to hide if I wanted to, luckily I was already the type of person that loved oversized jumpers so I had plenty to wear on top it so it wasn’t noticeable. And the £2 t-shirts from primark were a godsend for something comfortable to wear underneath it. 

I was told I’d be wearing my brace for six to nine months, and I ended up starting the process of stopping wearing it at my nine months post-op appointment, and was pretty much not wearing it at all by one year post-op.

I had a few hiccups during recovery, but nothing major. I had a lot of rib pain afterwards because my ribs were moving to a less prominent, more normal position. People were often surprised when I said I didn’t get much back pain, it was more my ribs and hips that bothered me. There was one day in particular I remember which was almost three months after my surgery. I was sitting in class and I felt myself going really pale and the pain was so bad in my ribs. I ended up going home and going straight to the doctor where they did a blood clot pin prick type test which came back positive. So now it looked like I had a pulmonary embolism which was causing the pain, so I was sent to the hospital and kept overnight after they gave me an injection to stop clotting, in case there was one there before they did scans the following day. It turned out that I did not have a blood clot and the rib pain was presumably just part of the recovery. My surgeon later told me that up until three months post-op our blood still appears as if it is clotting in these types of tests, which would probably be why the pin prick test came back positive.

I missed a lot of school during recovery, when I started in August after the op at the end of June I was doing a phased return. Then when I got to full time I was still missing a lot of school, I lived an hour away from school which was not ideal because sitting for long periods of time was a painful experience. I emailed my teachers every time I missed a lesson to get the work I had missed and caught up. This was in fifth year, the year that I was completing my higher exams so I was pretty worried about how I would perform since I was teaching myself half of the materials. Luckily, I wasn’t really going out anywhere because of my recovery so I had plenty time to dedicate to school work. It paid off because I ended up with AAAAB results in my higher exams which led to an unconditional offer to my first choice university.

I have just been to see my surgeon three years (almost to the day) after I first met him and he told me I needed a spinal fusion, and I couldn’t have asked for a better surgeon to be dealing with me. All in all, I do not regret getting the surgery. My lungs are a lot better now and I don’t spend six out of twelve months in a year coughing. I still feel self conscious of my deformities and I still struggle with pain from time to time but I am learning to embrace it. My scar tells my most interesting story and I am honestly proud of myself for having come out of the other side of this difficult journey. 

My scoliosis will always be a part of me, which is why I want to raise awareness so others can embrace their condition too.

Here is a link to my STV news story about the new innovative jackets at Edinburgh Hospital. 

https://stv.tv/news/features/1382168-scoliosis-teenager-s-new-lease-of-life-after-shock-diagnosis/

I am adding the link to the pluma Italia bangle shown in the photo gallery for easy access, This bracelet was created by Pluma Italia to raise awareness of scoliosis, designed with Victoria’s Secret Supermodel Martha Hunt who also had a spinal fusion. All proceeds are donated to the Curvy Girls Scoliosis Foundation. The bangle is made of titnaium, like the rods in our spines and is engraved with the world resillient, which inspired my tattoo. They retail for $29 and are available at :

https://www.google.com/search?client=safari&rls=en&q=leah+bracelet+pluma+italia&ie=UTF-8&oe=UTF-8