Patient Stories

My name is Béatrice Frenette. I am 23 years old, reside in British Columbia Canada, and recently graduated from University with my Bachelor of Arts Degree in Communications and Theatre. Scoliosis defines a large portion of who I am, how I grew up, how I function, and how I make day to day decisions. It has truly been one of my greatest struggles in life, but also one of my luckiest. In 2008 I was diagnosed with idiopathic scoliosis around the age of 8 and received a back brace shortly after that. Even as a very young child I had shown signs of having scoliosis such as leg and hip pains. With time I was taken for many physiotherapy and osteopath appointments to help with pain and to try to slow the rate of my curvature movement. I had a double curve, and it was quite pronounced. Scoliosis runs on my mom’s side of the family and I received the most severe case.

My double curvatures were moving at a crazy fast pace as you can see from my x-ray progressions below. By age 13, it was clear that I was in a lot of pain. Simple tasks like physical exercise, breathing, walking long distances and even sitting in class for too long was very difficult. Needing to wear a chunky plastic and metal back brace that wrapped around my entire back and abdomen didn’t help my self-confidence either. It helped for a short time and supported my core, but my scoliosis progressed very quickly. A mild curve is less than 20 degrees. A moderate curve is between 25 degrees and 40 degrees and scoliosis reaches a severe state when the curve is more than 50 degrees.

When my double curve reached around 65 degrees, it was time to decide for the future of my health. I had reached a point where I had very little options that would help decrease my chronic pain or mitigate my curve growth. In September 2014 I turned 14 years old, and on November 10th I underwent a 13-hour spinal fusion surgery. The beginning was the most difficult. I was in the hospital for a while, missed my baby brother’s first birthday, and had to learn how to walk again in a new body. I also missed school for several months. I was in grade 9 at this point, and I often felt bummed out that I couldn’t go to school or maintain friendships while I healed. However, after all of this, my spinal fusion has greatly improved my quality of life.

Now I live with a fully fused spine with two rods and 27 screws. And to clarify one of my most asked questions of all time— no I do not set off the airport alarms when I walk through security. I bet many others with a fusion have received this silly question. 2024 marks 10 years since my surgery. Having had the fusion for 10 years now, means that it is time to potentially revisit my surgery and look at pain mitigation options such as additional nerve blocks and changes in my medications. I have always worked to approach my situation with optimism, hard work, and the most strength that I can give in that moment.   Looking back at these pictures of my 14-year-old self, I am reminded of the goofiness and playfulness I always had as a kid. Even though it was a hard recovery, I am happy that it changed my life in a positive way, and I still managed to keep a joyful spirit through the entire process. Here are a few photos of me (age 14) prepped before going in surgery and afterwards.

Although these last 2 to 3 years have been rough in terms of my physical health and lower back issues, I feel grateful that I get to experience this journey. It has truly shaped me into who I am, has allowed me to connect with different communities, and gain a deeper empathy for the world and the people around me.

Something people may not realize is that scoliosis requires a lot of upkeep and discipline, whether you have a fusion or not! For example, to try and maintain my spinal health, I go to hot yoga, physiotherapy, massage therapy, and acupuncture. I’m currently seeking out other pain relief methods because my constant chronic back pain is becoming more of a distraction and challenge. I rarely complain about my pain, and I say that it is because I can’t do anything about my fusion, therefore there is no point in complaining about it. I feel determined and strong to keep looking for different techniques I may use as I grow into my old age with a fused spine.

I think it’s important to talk about the aspects of scoliosis, especially in young children and adolescents so that they may make informed decisions on how to treat their scoliosis. It’s important for families to understand the resources that are available to them when it comes to making life altering decisions like surgery, especially looking at what your life would look like after surgery years down the road. People don’t know just how severe scoliosis can progress into, just look at my case for example. That is why I am sharing my story with the Setting Scoliosis Straight Foundation. They are a huge hub of information and provide so many helpful recourses to families and individuals struggling and experiencing scoliosis.

The stigma surrounding chronic pain is real, especially because it is something that’s invisible and can only be felt by the person themself. I struggle with this daily but always remember to take it one day at a time. Even after all of my pain, countless appointments, and difficult times in school, I feel lucky because it’s pretty cool that this story was given to me. I have grown with this disability, I understand it, I’ve learned to love the ups and downs, and I get the opportunity to teach others about it. I truly know in my heart, that whatever boat you are in, you can do it. One day at a time.