619-810-1430
info@ssshsg.org

Patient Stories

Rachel L

I was diagnosed with Adolescent Idiopathic Scoliosis in 2013, when I was 12 years old. Although my spine had been straight less than a year earlier at my annual physical appointment, I suddenly had a curvature of over 50 degrees. It seemed as though my entire world came crumbling down. As a teenager, this diagnosis made self-acceptance seem impossible. At the same time, as a dancer, tennis player, and musician, it was difficult to think about not being able to continue these beloved hobbies.

The thought of having my spine fused with rods and screws was terrifying for me and my family, so we decided to pursue alternative methods of treatment first. For the next two years, I wore three different back braces, did hours of physical therapy exercises daily, and went to seemingly countless doctor’s appointments. But after all the blood, sweat, and tears, my curve had progressed to 80 degrees, and surgery became inevitable.

I had my surgery on July 15th, 2015: a day that changed my life. My surgery and recovery went smoothly, and although painful, things slowly returned to normal – in fact, better than normal. Having a straight back boosted my self-confidence tremendously, and not having to spend each waking moment worrying about whether my curve was getting worse was incredibly freeing.

But, I wasn’t done with scoliosis just yet. I knew there were thousands of other families struggling like I had, and I wanted to offer them support. So, I created a scrapbook diary documenting my entire journey from diagnosis to recovery and distributed it to local hospitals. I started meeting with patients and families in person and through email, answering their questions. I also joined Setting Scoliosis Straight as a patient ambassador and research volunteer, wherein I’m able to both share my story through media and public speaking, as well as contribute to our understanding of scoliosis and developing the best methods of treatment.

Now, five years after my surgery, I’m physically active and not limited in any activities; I love working out, swimming, hiking, and dancing. My scoliosis journey has been the single most defining chapter of my life thus far; even as I’ve healed and moved on, I’m still conscious of the way that it transformed my life, giving me the opportunity to learn about my own resilience and make a difference in the community. If you’re just beginning this journey, please know that everything happens for a reason, and that you will emerge stronger than you were before.

Rachel’s Interview

 

How did you feel when you found out you had scoliosis?

The moment I found out I had scoliosis, I was shocked, but it also didn’t feel real. One minute, everything was fine, and the next minute, I was staring at an x-ray of a huge curve in my own back. People started talking about putting rods and screws into my spine. It seemed like my whole world came crashing down; I was shocked, confused, and scared.

What treatment were you recommended when you were diagnosed?

At the time of my diagnosis, my curvature was 50 degrees, which is severe enough that most of the clinicians I saw recommended surgery as the first option. We also discussed the possibility of bracing, and although my doctors and surgeons were concerned it might not be able to stop my curve from progressing, my family and I decided to at least try it out in case it would work.

How did you find out about surgery?

Surgery was recommended right off the bat because I was diagnosed with a large curvature.

What type of surgery did you have?

I had a spinal fusion, where T4-L3 were fused with titanium rods and screws.

What was the outcome of your surgery?

The outcome exceeded our expectations. After my surgery, my 80-degree curvature had decreased to around 10 degrees, and five years later, everything is still holding up very well. I rarely feel pain, and best of all, I never have to worry about my curve getting worse and not being able to do anything about it.

Did you have any setbacks?

My main setbacks came pre-surgery when I was using several different non-operative treatment methods. I had to wear three different uncomfortable braces, go to the chiropractor every week, and follow physical therapy exercises at home – all of which were very time-consuming and emotionally draining. Not knowing whether all my efforts were worth it and the discouragement of my curve progressing despite everything was the hardest part of my journey.

What were your emotions?

    1. Pre-surgery
      1. Constantly anxious, insecure, uncomfortable
    2. Post-surgery
      1. More confident, empowered, resilient

Do you have any advice for other girls/boys diagnosed with scoliosis?

First, listen to your doctors! It’s fine to get second opinions, but don’t rely too much on Dr. Google and people without medical degrees to influence your treatment options. At the end of the day, the doctors are the experts. Even though it might be discouraging to hear that surgery is your only option, it’s probably the truth, and will end up saving you trouble in the long run.

Secondly, don’t lose heart and don’t be consumed with fear. Not only are you not able to control what happens with how your spine progresses, how the surgery goes, etc., but also know that no matter what the outcome of your journey is, it will not be the end of the world. Trust that you are in good hands and that things will work out, because worrying won’t change anything! And on a cheesier note, you will undoubtedly arise stronger and more resilient on the other side.

What extracurricular activities did you do prior to your treatment?

I was a very athletic kid; I had danced since I was four years old, played tennis, and practiced martial arts prior to my diagnosis. Although I temporarily stopped these activities to focus on my treatment and recovery, I eventually resumed them. I’m even on my college’s competitive dance team now! I also played viola and piano, which I continue to do to this day.

What do you enjoy doing in your free time?

I have always really enjoyed being in the kitchen, but quarantine kicked my cooking and baking up several notches. I’m now literally obsessed with making new creations in the kitchen. My fridge is always stocked with baked treats, which I also love to give out to family and friends as a token of love.

What is one thing you’d like people to know about scoliosis?

I wish people would know how serious it is. Scoliosis is often considered a minor aesthetic issue, and most people aren’t aware of the consequences of a severe curvature – it can affect your organs, disrupt your breathing, and limit your movement. I wish there were more education and awareness of scoliosis, and more research to better understand the condition.

Why is supporting the scoliosis community and scoliosis research important to you?

I have personally found great comfort and companionship in the scoliosis community. We are each other’s greatest resource, and that’s why I’m so passionate about sharing my experiences and helping others navigate their journey. Having been a scoliosis advocate for the past several years, I have seen firsthand the difference that this sense of community makes in patients’ lives. In terms of research, there is so much progress that has been made, and Setting Scoliosis Straight is really spearheading the effort to advance scoliosis treatment. Still, we need to better understand the causes, mechanisms, and risk factors behind scoliosis development, and we need to find more effective, less invasive ways to treat scoliosis. As a research volunteer for Setting Scoliosis Straight, I have had the chance to contribute to studies examining the long-term effects of spine surgery and the effectiveness of new procedures. As someone who is interested in pursuing medicine, this has been incredibly rewarding and an amazing learning experience.

What is your mission now (to give back, spread awareness, etc.)? What made you want to volunteer for Setting Scoliosis Straight?

My mission is first and foremost to support patients and families who are currently going through their journey. My scoliosis experience was the single most defining chapter of my life thus far, and it changed me in so many ways. It was incredibly challenging for myself and my family, but we’ve all come out on the other side more resilient and with a newfound passion to help those that we can. If my story can touch just one person out there, that makes it all worth it.

Have you learned anything by volunteering at SSS?

I’ve learned that we have such a large, welcoming community of other patients and families who are excited to talk to each other and share about our experiences. For many other patients and I, one of the biggest sources of comfort during our journey was being able to relate to one another and ask each other for advice. I’ve met some wonderful people through the scoliosis community, and I encourage you to reach out too! Setting Scoliosis Straight is a great place to start, as we have many patient ambassadors who are eager to connect with you.

 

READ MORE PATIENT STORIES

Read more patient stories like this from around the world.