My Back Story
Before I dive into this I just want to highlight that my experience may be very different from others’ experience and we are all on our unique journeys. I hope that my story provides some insight but again we are all different, and have very different experiences, and different solutions.
An X-Ray of my spine done April 2023
I feel like all my stories start with “well… I grew up as a figure skater” and this is true because I had built such an identity as an athlete and skater. I was on the ice learning to skate when I was 3 years old and progressed very well in my skills. School wasn’t so much of a priority to me as compared to what skating meant to be. Anyways, fast forward some time to when I was around 12 years old, my Mom had been rubbing my back one day, and lost my spine. She would try to follow my spine but would lose it, I imagine this made her super confused. This prompted a visit to the doctors office and an x-ray. The x-ray had confirmed what my mother had experienced. In the Xray you could see 3 different curves in my spine, my neck, mid back, and lower back …. no wonder I’m so short (4’11”). After receiving the diagnosis we were then referred to McMaster Hospital. My parents were not impressed with the McMaster surgeon’s “bed side manner”. I remember sitting in the surgeon’s office with my parents and being told that “I needed surgery yesterday”. I remember distinctly sitting in the room crying with my mother at the thought of surgery and not being able to skate again. I don’t remember telling my skating friends of my experience and how I might have to stop skating but I must have because I do remember receiving a Get Well type of handmade card from one of my friends Hayleigh at the time. Something I appreciate to this day.
Because of the surgeon's “bedside mannerism” my parents wanted a second opinion. From there we went to Sick Kids Hospital for an Xray. During this time my mom had spent 3 months googling and learning about scoliosis. Scoliosis treatment seemed to be almost unheard of in Ontario and this probably took place in the year 2008. After hours on the internet she had come to find Chiropractor Dr. Brian Ferguson in Orangeville, at the time this was an hour drive from our house. We started with frequent visits to the chiropractor, which was about 3 times per week. During this time we had also learned of ScoliSmart with Dr. Clayton Stitzel in the States.
So we took a leap (more like a long drive) and traveled to Lititz, Pennsylvania. Good thing for autocorrect because I still can’t spell Pennsylvania. The Lancaster Spinal Center was the clinic in Pennsylvania that I was going to be receiving the ScoliSmart treatment for 2 weeks. It was about a 9-hour drive and I remember the back seat of the car being so uncomfortable, the way the backseat hugs just the left side because that was next to the window always caused some pain in my left shoulder blade. My parents actually still have the same car to this day and the backseat always bugs me for any drives that are longer than an hour. The drive was slightly difficult but I tried to sleep as much as I could. I remember Lititz being a small town but they had an old chocolate factory and Hershey World was nearby which was exciting for me! We found a camping resort, called Starlite in Lancaster County about 20 minutes from the clinic. It certainly wasn’t feasible to stay in a hotel for 2 weeks so it was a good thing that I liked camping. I really liked the Starlite resort because I could go swimming, play basketball and they hosted fun activities throughout the summer so this was like a family vacation for me, the hard part was being away from a rink for that long.
The clinic was not like any other chiropractor I had seen before. I remember walking into the clinic and seeing a little bowl of candy on the front desk (of course that was the first thing I noticed),. The clinic was open concept with another room and a couple smaller rooms like the x-ray room and Clayton’s office. There were odd-looking machines and PC pipping structures everywhere. The Eckard table and Traction chair are the ones I remember the most. The Eckard table was somewhat like your typical massage table but not really. You would lie face down on the table with your arms extended out holding onto bars and the bottom half of the table moved up and down slowly, so my legs were moving up and down while the rest of the table was angled and not completely straight… thats not all. You were strapped in, there were 4 different straps pulling me each direction tailored to my curve. The traction chair was somewhat similar, I would sit in this odd wooden chair that also had straps and a harness to hold my head which created traction. Attached to this harness around my head was a pulley and at the end of the pulley was a weight. We went through a whole cycle of these different exercises and machines. We actually ended up getting a Traction chair shipped to our home which we refer to as the “Medieval chair” because a lot of these apparatuses looked medieval to me. Humour was certainly a good way to cope because I think it would have been difficult for any child to sit in these machines all day when they could be living a “normal” life hanging out with their friends or on an actual vacation in Disney World. From what I can remember I was at the clinic from 9am-5pm with a 2 hour lunch break in between, strictly going through the cycle of these exercises. As a 12 year old in the year 2008, I was very much into stuffed animals, particularly Webkinz at the time (hands up for anyone that knows what a Webkinz is!). I would bring my webkinz to the clinic and they would sit on the wobble chair next to me, I think this was a big coping tool for me as well now that I look back on it. I think my webkinz had brought me a sense of comfort especially considering that I can’t remember many other kids being at the clinic when I was there.
The memory of my webkinz and how comforting they had been to me resurfaced when I came across the Higgy Bears website recently. I think it is amazing what Higgy Bears is doing for kids going through bracing and spinal fusion. The 12 year old me would have loved that ….Heck! The 28 year old me wants one! I also love that there is a Higgy Bear with the same brace design as me! …. Yes I have an adult brace…. I’ll get into that later.
I continued to see Dr. Stitzel for about 3 years and that was our summer vacation. I think by this time I must have been going into Grade 9 because I remember having the ScoliSmart Brace. This brace had tight mesh like shorts with velcro around the waist band, a vest with elastic like straps that would wrap around my body a certain way and attach to the velcro. This brace was designed to be like an “activity suit” intended for use in sports too. This brace was slightly uncomfortable and squeezed my body in certain ways. I’ll be honest here but I remember going to school with the brace on then going to the washroom to take the brace off and stuffed it in my locker. It was tough because all I wanted in high school was to create a good first impression and be liked, I wanted to be one of the popular girls, and looks mattered very much to me at the time. My parents had taken me clothes shopping to try and find outfits I would feel comfortable in while wearing the brace underneath my clothes. However, this was still challenging because I had somewhat developed breasts at this time (although small) the brace just didn't make them look right the way it sat and pressed up against one. High school for any teenager is an intimidating time and was already tearing down my self-esteem despite wearing a brace.
My spine certainly impacted me socially when it came to school but it never impacted me when it came to skating. I never really thought about my spine or worried about it while I was skating. I think skating allowed me to build muscle, coordination, balance, flexibility, resilience, and strength which ultimately helped my scoliosis despite not being a very spine-friendly sport. I can only recall once where someone had commented on my spine while I was skating and that was my coach. One day I was doing a "Pancake spin” and my coach noticed my rib hump when I did the spin. I thought that considering she’s been my coach for about 10 years, I was doing a pretty good job with my back if she’s just noticing this now. I think this was a healthy way of coping with that comment because I know she didn’t mean for it to be hurtful even though this is something I could have started to dwell over and become very self-conscious about. Fast forward a little bit, I progressed in skating and even competed in pair skating. Doing all the lifts and throws was scary but exciting and I will be forever grateful I was able to experience that even though it had its trials and tribulations during that time.
I skated up until I was about 19 years old, I struggled with the mental challenges and culture of skating and ultimately ended up tearing my ACL and meniscus in my knee. I was so afraid of surgery and I didn’t see a point in getting it if I could do almost all of the things I had once done before. I think that I had such a negative view of any type of surgery because as a 12 year old being told I needed surgery we had done everything in our power to avoid it. So I think I had the mindset that surgery was dangerous and something to avoid at all cost. I continued on with my life and went to College and University. I had then suffered another knee injury 3 years later tearing my MCL which finally prompted me to consider the ACL reconstruction surgery. I tore my ACL in late 2015 and had the surgery in the summer of 2019. I was so preoccupied with school and my knee surgery that I had forgotten about my spine entirely.
I was around 17 years old here. This move is called a “Death Spiral”
I forgot about my scoliosis for years which is a great thing symptom wise! I rarely experience pain and I live as if my spine is a normal functioning spine. It’s certainly not a “normal” spine but it’s been able to function in ways that go beyond day to day life. However, probably not a great idea to have ignored my spine for so long because my curves did progress. In this instance progress is not a positive, in Scoliosis terminology a progression is when the curves or Cobb angle have gotten larger or increased. In 2023, I moved in with my partner in Toronto. Moving to Toronto I realized that I was much closer to a Chiropractor that I had once received treatment from many years ago while I was going through my initial journey. This Chiropractor is Dr. Jacob Kang in the East end of Toronto and he specializes in scoliosis and has machines similar to what Dr. Stitzel had in Pennsylvania…. including that “medieval” traction chair. In April 2023 I went to visit Dr. Kang as it had been such a long time since I was there last but somehow they still remembered me. They even had a picture of me on the front desk doing a ‘haircutter’ spin from when I skated many years ago, this made me almost tear up. I had a whole assessment done, x-rays and all. They taught me schroth exercises and got me set up with a brace. I thought it was interesting that Adults could still have a brace but I trust Dr. Kang’s opinion very much. I got to pick out the pattern on my brace, I chose the one with the palm trees (I’m trying to manifest a vacation) and I wear it part-time. The hardest part for me so far in returning to the clinic is being consistent with my exercises and having a routine. I was hesitant to do the schroth at home because I was scared of doing it wrong. I’ve been stuck with this for a little bit so on my most recent visit I made sure to ask questions so I could understand better.
Based on my conversations with Dr. Kang and as a Registered Psychotherapist, naturally we spoke about mental health, I was really inspired to research more about mental health for scoliosis patients. I realized that there is not a ton of resources out there and I wanted to help bridge the gap. I not only want to help bridge the gap between mental health and scoliosis, I want to be a leader in the community.
I’ll stop here because I believe you are all caught up now. I recognize this is going to be a lifelong journey so I might as well just get started writing a book (Should I actually write a book? haha). I was listening to a podcast recently and the guest on the podcast with scoliosis had said “I would rather be aggressive with conservative treatment than be conservative with aggressive treatment” and this was so incredibly inspiring to me. HOWEVER, with that being said for some people surgery might be the best option. I was terrified of surgery but after getting my knee surgery I realized that my knee function was a lot better after the ACL repair and maybe I should have done it sooner. I think it’s best to see a scoliosis specialist, but it’s always okay to seek a second opinion.
Before I wrap this up I just want to shout out to my incredibly supportive parents and sister for always sticking by my side and sacrificing many hot and sunny beach vacations to sit in a clinic in the middle of farm country Pennsylvainya. I also want to shout out to all the organizations and people who are telling their Back Story. I hope that my story brings some insight or at least some normalcy to other scoliosis patients.