Patient Stories

The summer of 2016, I had just graduated from elementary school and was about to start grade nine at a new school with new people. Growing up I had always gone to a separate Catholic school and I was now moving to a public school. I was excited but nervous to start this new chapter as any other 14-year-old is. One night my back was sore so I asked my mom to rub it, I bent over a chair and I heard her gasp, asking what was wrong with my mom kept asking me to straighten my back out and I kept responding that I was. Instantly my mom started freaking out saying she was bringing me to Sick Kids the next day. As I’ve grown up in and out of hospitals, I immediately declined to tell her I just wouldn’t go, and she was overreacting. As we kept arguing about it, we settled on visiting the local hospital the next day to get an x-ray. We got up and went and I was sent for my first of three x-rays that day. After the first one, I remember sitting in the room while being so angry at my mom for bringing me there, I was convinced she was overreacting, and nothing was wrong. The doctor came in within 15 minutes of the scan saying they needed to take some more photos and run over the images. Me being confused I followed the doctor where we proceed to have two other scans done. Now, I was nervous. I knew something had to be wrong if they were asking me to have multiple scans done. 20 minutes later we were called out by the doctor to review the x-rays. Staring back at me as my throat ran dry and my eyes started to well up, I saw the x-rays reflect the curve of my spine, the reason behind my reaction was the doctor saying that the only option I had was surgery. I was in disbelief.

            The thought of having another major surgery scared me so much. When I was eight months old when I endured surgery for neuroblastoma, childhood cancer. Although I don’t remember the event, the idea of having to be followed by another clinic was terrifying. Despite this, I never shed a tear in front of that doctor. Instead, she referred us to Sick Kids for a follow up as that’s where I see all my other specialists. The moment I step outside the hospital though, I broke down in tears. I was not having surgery and I was not having this whole situation. I spent the next 72 hours on and off crying as the news broke to my family that I was going to need major surgery. Anytime someone mentioned it I would instantly begin to cry. I wanted to run away from the situation instead of dealing with it. Eventually, my follow up appointment at Sick Kids came. This is where they told me that since seeing the doctor in my hometown that my back had already gotten worse. I don’t quite remember where my back was at this point, I believe around 55 and 62 degrees with a 32-degree sacral rotation. At this point, they also mentioned that it had gone past the point where it would continue to get worse until I would eventually become crippled. Even knowing this information, I was still dead set on not having surgery. I just couldn’t wrap my mind around the idea.

This follow up appointment is when the doctor had mentioned a brace saying, ‘It won’t fix it, but it should stop it from progressing, if it corrects it then that’s just icing on the cake’. I was set on it and we booked my appointment to get casted for a brace that same day, A few hours later I was getting casted for my brace, honestly one of the weirdest experiences I’ve ever had. They lay you down on a hospital bed and cover you in paper Mache essentially. I remember it being hot but other than that it was just weird. We left the hospital and were told to come back 6 weeks later for another x-ray and to get the brace. To be honest, I was so excited, and relieved, to not be having the surgery, (little did I know that a year later I would). 6 weeks flew by and I was about a month into high school. School was okay, I had friends, but I did find it hard to try and ‘fit in’. Don’t get me wrong though I look back at my grade nine self and cringe ha-ha. The time had finally come to get the brace, I was x-rayed again and there were no changes to my back. I got the brace and they gave me the whole rundown on how often to be wearing it. It’s a four-week process of working yourself up from sleeping with it to wearing it 22-23 hours a day. Life went on and I got used to it, I had a couple of difficult experiences with people knocking on it or awkward times where people would hug me and their face just changed to confused, which I found funny. It just became a part of me, but as much as I was gung-ho about it in the beginning, I slowly started to hate it. It was sore, itchy, hot and uncomfortable. I was become over it, to say the least. By this point, I was in the final stretch of my grade nine years meaning I was almost a year into having the brace. It was getting old fast and with summer approaching I was becoming even less motivated.

            It was a sunny day, so close to summer vacation maybe around May. I was having a discussion with my uncles’ girlfriend (Hi Amy!) and she told me about a model named Emm Arruda who had scoliosis, endured the surgery and was on the rise with a modeling career. Something just clicked. I had always wanted to model from a young age and I always thought if I had the surgery, I wouldn’t be able to ever do it. At my next appointment, it was like night and day. I was asking about the surgery when I could have it, what the recovery looked like, all the questions you could think of. I remember joking about it with the nurse. That week I was in my guidance counselor’s office trying to align my credits and ensure I wouldn’t fall behind as I was going to be out of school for at least a month. I came home that day and told my parents school was all sorted out and that I was ready to do this. They were both so shocked that I just took all this on and started organizing it on my own. The next few appointments consisted of discussing surgery and picking a surgeon along with multiple x-rays. Finally, I was put on a list and told I would get a call when a spot opened (this is because I requested to be put on a cancelation list so I could have the surgery ASAP). I got the call in November of 2017 that my surgery would take place on February 20th, 2018. My pre-op would be on the 11th.

            I was so excited oddly enough. By this time, I had transferred to the school, I currently attended and had sorted out all my second-semester classes to accommodate for my surgery. I even enrolled in online math so I could stay on track. The next few months went as normal. My final x-ray before surgery my final curves were at 78,88 and 32-degree sacral rotation. The 11th rolled around and we did all the pre-op work, which was some blood tests, pre-op photos and meeting with the anesthesiologists. I was so ready to endure this. I just wanted to have it over with so I could move on with my life. When the day finally rolled around, I don’t remember being nervous at all. I was just excited to have it finished. Although I didn’t sleep well the night before. That morning I showed up at the hospital with my surgery was scheduled for 8:30. I won’t go into detail over my hospital stay as I have two videos on my YouTube channel which shows and explains in detail how everything went. So, if you want to see that finish this then go check those out ;). To sum it up though, my surgery ran fast taking only 8 hours from start to finish. I spent 5 days in the hospital and then went home. I took a total of 3 weeks off school but continued to stay home and do homework like that until my exams rolled around.

Following the surgery, I had a week post-op appointment along with a 1 month, 3 months 6 month and year appointments. Just recently I went for my 1.5-year appointment where we reviewed everything again. The surgery reduced my scoliosis from two curves of 78 and 88 to one minor 12-degree curve and eliminated my sacral rotation. In short, the doctors killed it and it couldn’t have gone better. I have one final appointment at 2 years before they release me from the clinic, and I’m all done with follow-up appointments. I honestly can’t believe as I sit here, I’m 1 year and 10 months post-op. The time has flown by, I’m now in 12th grade applying to school for pre-med getting ready to start the rest of my life. I even managed to finesse getting signed by a modeling agency! (Shoutout Tyg, Cathy, Allison, and Sharon the most amazing bookers a girl could ask for Xx). I’ve also gotten the chance to interact with the one and only Emm who is an absolute doll and hopefully one day I’ll get to thank her in person for the inspiration she’s given me. This whole journey has taught me so much about myself and others. I’m so thankful that I made those YouTube videos as its’ given me the chance to share my story to over 70+ thousand people and allowed me to interact with hundreds more.

To everyone who’s been with me on this journey, at any point even if it was just a DM, thank you for being a part of my journey. To conclude, I’ll leave you with this, the day I thought my life was over (dramatic I know) turned out to be the start of the most amazing journey I’ve ever been on. I’ve interacted and inspired more people than I ever thought possible. Scoliosis truly changed my life for the better. So, when life gives you lemons, you take those lemons, you make lemonade, and walk with your head a bit higher because you can handle anything life throws at you. If you’ve made it this far thanks for reading my journey. If you want more in-depth of the actual surgery and pre/post-op check out my YouTube, my searching Emily Renee. Also feel free to message me on Instagram @/emilyrpainter about any inquiries, scoliosis related or not. Thank you to my parents for being my #1 supporters, I love you guys. All the love Xx.