Chapter 3: Maya Perko's Scoliosis Story

This is the third chapter of our blog series called The Stories Of Us, and today we will be sharing Maya Perko’s health journey with scoliosis in time for Scoliosis Awareness Month. I’ve known Maya for quite a long time, we actually played soccer together when we were younger, and it was great to get back in touch with her over the past year and learn about your journey with Scoliosis. I’m really excited to share her story with you.

Tell us a bit about yourself?

I have lived in Vancouver, Canada all my life. Growing up I had an active lifestyle, played numerous sports and had the “no pain, no gain” mentality for a very long time, until a few years ago. I am now a bionic woman, in more ways than one. I had spinal fusion surgery in August 2017 to correct scoliosis, leaving 2 stainless steel rods and 26 screws in my spine. I also wear an insulin pump and continuous glucose monitor to help manage my type 1 diabetes! It’s an understatement to say there’s a lot going on with my body. :)  

What do you do for work?

I have been working as a Registered Dietitian specializing in diabetes care for the past 5 years. When I was diagnosed with Type 1 diabetes, the nurse at the hospital, who was giving my family and I a crash course for 3 days, also had Type 1. She looked very healthy and shared many fun things she liked to do, highlighting that diabetes won’t stop you from living a full life. She became a very important role model for me during that uncertain time. I can’t thank her enough for doing what she does and I wanted to do the same for other people living with diabetes.

June is scoliosis awareness month. can you tell us a bit about this and share your scoliosis journey with us?

Scoliosis awareness month is meant to increase awareness, treatment options and hopefully early detection of the condition. The sooner scoliosis is detected the better, as less invasive treatment options can be used  before major spinal fusion surgery. The surgery is typically recommended when the spinal curvature is typically 50 degrees or more.

What is one of the biggest struggles you have encountered, either personally or within your line of work?

Where do I even begin?! The major struggles I have faced in life typically fall into 3 categories. One of which was being a student in university, making it into a very competitive program and completing a very demanding 10 month dietetic internship all while working part-time. The second, living with type 1 diabetes for the past 16 years, and having to do the work of an organ, twenty-four hours a day, that isn’t functioning properly, in order to control a condition that doesn’t always play by the book. Third, living with scoliosis over the past 20 years, wearing a back brace for 3 years, living in pain and discomfort and having spinal fusion surgery. 

If I had to choose one, I would say Scoliosis has been the biggest physical and mental struggle. Type 1 diabetes is in no way easy to deal with, however I think I got used to it after a few years and in time learned what worked best for me to manage it. 

My scoliosis journey took the complete opposite route. With time, it became more and more taxing and much more unpredictable.

You’ve recently started actively sharing your scoliosis journey through Instagram. What sparked this and what message can you leave with those struggling with this or those who don’t know much about it?

Living with Scoliosis has been a battle that I fought silently for the most of my life. One of the challenges was living with a condition that does not have a clear cause. There are different types of Scoliosis. Mine was “idiopathic” meaning “unknown cause”. When such a condition keeps getting worse, it can be very daunting. How do you fix a problem if you don't know exactly what is causing it? 

Up until my early 20’s it didn’t physically bother me much since my curves progressed very slowly and I was not in pain.  My spine was shaped like an ‘S’ with two main curves. When I was nine years old my mom caught the scoliosis by having me bend over to touch my toes, noticing that my right rib cage stuck out. The main curve was ~25 degrees at that time and I really didn’t feel anything out of the ordinary. Even though I was not in pain, I struggled to feel confident in my body as a young girl. A body that was quickly labelled as being deformed and mis-shapen.

I wanted to avoid surgery at all costs, so I wore a back brace in my early teens as recommended by the specialist. For 22-23 hours a day, I wore it religiously and the brace stabilized the curves during that time. After three years the brace was discontinued and I was told to strengthen my core and stay active. So that's what I did. I took pilates classes, swam, played soccer and weight trained but my curves kept progressing. By the time I was twenty-two my curves were ~40 degrees. At that point I felt very uncomfortable in my body. I could feel my shoulders twisting in one direction and my rib cage in the other. 

I really didn’t know what to do at that point. I felt like I was following my doctor's instructions and my body was still rebelling. So I decided to take things into my own hands. I searched the internet for “Scoliosis physiotherapy” and found a clinic in Vancouver that had a holistic approach. I was treated with a multitude of therapies. My practitioners knew my body well and I felt more symmetrical after each session. Once again, I religiously did my lengthening exercises at home, often for 1-2 hours a day. 

After one year I felt substantially better, decreased my curves by two degrees and grew one centimeter (meaning I had likely lengthened my spine). However, one day while riding the Skytrain, my entire back shifted from a sudden jolt on the train. I felt my rib cage move back to where it was before I started therapy. It felt like all of the progress I made over the past two years dissipated. 

After reading numerous research papers about the progression of scoliosis in adults and seeing that in most cases (for curves over 30 degrees) they continued to progress one degree per year, I asked my surgeon to put me on the waitlist for spinal fusion surgery. After much thought,  it seemed like the right decision for me. I found solitude knowing that after surgery my spine could not move in undesirable directions anymore. 

Fast forward through a seven hour spinal fusion surgery in August 2017, I felt very balanced and symmetrical for the first few months. I was no longer in pain, had a completely straight spine and fairly symmetrical rib cage. This was it I thought! But after a few more months I started to feel the twisting sensations return ever so slightly. As I became more active it continued. Again my body was not responding as I expected. It was another case of “here we go again”.

Then one day a photo of a girl with scoliosis appeared on my Instagram feed (under #scoliosis). She had drastically improved her rib hump using something called “posture therapy.” I messaged her right away asking for more information, and then shortly after started the online program. I continued to add more activities such as rollerblading and weight training into my routine. Things were starting to feel somewhat normal and I was planning to move abroad to Australia for six months. Then life happened again and I experienced whiplash on the Skytrain at the end of 2019, at which point I was once again in excruciating pain. I found myself in a deep dark hole I was not sure I was going to be able to get out of. All of the therapies I had tried in the past that typically provided some relief, were not helping. 

But each day after a posture therapy session at home I felt slightly better. I was still in pain daily but each posture therapy sequence made an incremental improvement, along with visiting my physiotherapist for manual manipulations. After five months of doing posture therapy daily my pain went away! The most freeing part was learning how to essentially treat myself. Especially over the past three months in quarantine with no access to my practitioners. It usually only takes 1-2 sequences of posture therapy to ease any pain or tightness that managed to build up from a stressful day or activity. There is so much more I’ve gained from this program other than the physical benefits. Being at ease mentally, having a new relationship with pain and so much more that I speak to on my Instagram.

The reason I started to share my Scoliosis story is because I have taken various paths to try to fix my back. I feel like I have found a therapy that actually helps get to the root of the pain and imbalances of a scoliotic body. Something I wish I had found earlier. That I can’t just fix my back in isolation, but treat the body as a whole. I know what it’s like to live silently in pain, with a condition that not many people in my circle really understand. I hope that my story can give others hope that they too can get better and have options to try before or after surgery. 

You love to travel, can you share some of your favourite experiences? has travel felt different after your surgery?

My favourite travel experiences are often those that are serendipitous. When things happen by surprise, usually thanks to strangers I meet along the way who show immense kindness. 

In the Philippines we made friends with the locals staying at our hostel who took us on a tour on the island Boracay to see the “secret” beach and Spider Bar where we enjoyed a beautiful sunset view. We had a blast that day and met with one of them a few weeks later in Manila for more exploring in the city. 

When visiting Mendoza, Argentina another local we met took us up to the viewpoint of town and surprised us with local pastries to try. Then entertained us over drinks and “asado” (barbeque) on the restaurant strip. We also enjoyed a tour of the local vineyards on a bicycle tour where we learned a lot about the wines in the region!

The other aspects of travel that I really enjoyed were seeing spectacles of the world such as Macchu Picchu, the Salt Flats and geysers in Bolivia, swimming through corals in the Philippines and walking on Glaciers/hiking Mt. Fitz Roy in Argentina. Those moments where you literally feel like you are in a dream, surrounded by so much natural beauty. And of course, as a dietitian I love to try all the local cuisines wherever I go (even if they do send my blood sugars for a loop sometimes).

Travel has felt a little different after surgery. I’ve had to come up with creative ways to make sitting in an airplane somewhat comfortable (as a tall person with rods in her back). I am a little more cautious during activities and sometimes have a hard time carrying a backpack for a long period of time. Having a travel buddy to help carry things has been very helpful! If my body hurts at the end of a long day (as it often does) I do posture therapy to help myself feel better. My friends are no longer surprised when they see me laying on the floor of our hotel room in random poses.

What’s next for you? any big 2020/2021 plans?

Unfortunately, due to COVID-19 I do not have any big travel plans coming up, so instead I will be focusing on enjoying beautiful British Columbia for the rest of 2020. Perhaps some camping trips! This quiet time will also allow me to focus on starting my own virtual nutrition business. I have been low key dreaming about it for the past few years so I am now ready to finally take the plunge into entrepreneurship at least part-time.  

If you could leave us with one message today, what would it be?

One of the quotes that resonated with me recently was:

“Sometimes when you are in a dark place you think you have been buried, but you have actually been planted.” - Christine Cain

When it seems like life is making bets against you, no matter how dreadful and permanent it might seem at the time, it won’t stay like that forever. You have to be your own advocate and do your own research sometimes to find the solutions to your problems. I didn’t think I could ever rid myself of pain after my last accident, but I found a way. It wasn’t an easy recovery, but I didn’t give up on myself. I connected with other people who had gone through a similar journey. They gave me hope when I didn't always feel hopeful for myself. Don’t feel like you need to go-it alone or that you are being a burden by asking for help. Through my travels and recovery I’ve realized that most of the time people want to be of help. 

Where can we find you?

You can follow my personal scoliosis journey on Instagram @mayaperkss and my nutrition account @mayaperko_rd where I share low carb recipes, diabetes management tips and glimpses into living with Type 1 diabetes!

 

We hope you enjoyed Chapter 3 of The Stories Of Us. Thank you to Maya for being vulnerable and sharing your scoliosis story with us. If any of you are struggling with scoliosis right now, connect with Maya.