The Canadian Scoliosis Screening Coalition
My name is Bianca, and my journey through scoliosis started at the age of 13 in August of 2022. I fell at a skatepark on my back and thought I had fractured my ribs, but after getting x-rayed at the hospital the doctor noticed a severe curvature in my spine. When I was told I had scoliosis I didn’t really know what it meant and neither did my parents. Over time, my curvature continued to progress, and I was referred to SickKids hospital where my x-ray revealed a 66-degree curvature. I was told I would need surgery, but was put on a two year wait list.
During this time, I was also swimming competitively and have been for the past 10 years. I noticed my times start to slip in early 2023 and felt an increase in back pain and my ability to breathe. My parents had been researching options for me and discovered a physio center that performed the Schroth method on patients with scoliosis. I did these schroth exercises for a few months, but noticed it wasn’t doing anything from preventing my curve from worsening, however it did help a bit with pain management. As the months went by I noticed
I had spinal fusion surgery at SickKids where two titanium rods and 22 screws were placed in my spine to help secure the spine as it fused and healed. I spent 3 days in the hospital where I relearned how to sit up, walk, and climb stairs. The first week after I was discharged was awful. The pain was excruciating, and I couldn’t do much other than lie in bed and get up to walk a couple times. Fortunately, over time I got better. After following up for my 3-week appointment, I was walking, eating normally, and weening off of all the strong medications. One of my biggest concerns after surgery was whether I would be able to swim again. I was told that after 3 months I would be allowed back in the water, and over time taught myself how to swim again.
It has now been just over two years since my surgery, and I am fully back to all my activities and have very limited pain. My experience made me wonder a lot about how things could’ve been different if my scoliosis was caught earlier. I am now spreading awareness about the importance of early detection especially in children and am continuing to learn more about treatment for scoliosis. The most common form of scoliosis is called Adolescent Idiopathic Scoliosis which is the type I had. I am now advocating for scoliosis screening to be done in schools, as research has shown that detecting scoliosis early leads to better treatment outcomes.
Through my journey I realized how difficult the emotional and physical toll of scoliosis can be. We definitely need people to be more educated and aware of what scoliosis is. I hope that through my initiative I will be able to spread the awareness that scoliosis needs and help people feel a little less alone in their journey.
"My name is Christine and I've been living with scoliosis for 35+ years. Looking back, I realize that the lack of screening, awareness, and education about scoliosis had a significant impact on my life. I wasn't diagnosed with scoliosis until I was a young teen despite having noticeable symptoms years prior to that. The delay in diagnosis and treatment led to more severe curvature and ongoing physical challenges. I've faced many difficulties, from chronic pain to limited mobility. However, I've learned that scoliosis is not just a physical condition, but also an emotional and mental one. I believe that increased awareness and education about scoliosis are crucial. If my family and myself had known more about scoliosis, we might have sought medical attention earlier, potentially preventing some of the complications I've experienced."
Christine was featured in CBC Investigates Patients wait in pain as a surgeon fights to get paid - all in a battle over health-care dollars June 25, 2023 by Lauren Pelley. "Christine Kaschuba first noticed a strange bend in her spine as a teenager. For years, it seemed manageable: she played sports, ran marathons and had three children. But slowly and steadily, her back deformity worsened. Her spine's C-shaped curve, a hallmark of severe scoliosis, is now roughly 70 degrees...The pain is unrelenting. It ripples from Kaschuba's back to her lopsided hips, sometimes shooting down her legs, all while her lungs struggle to take in full, deep breaths. Most nights, she says, the ache is so all-consuming she just wants to close her eyes and not wake up."
(Note: That national CBC news investigates broadcast initiated an (failed, signed by hundreds & presented multiple of times by MPPs from all parties except the majority ruling party) non-partisan Ontario Legislative petition in 2023-24 endorsed by the Canadian Spine Society Access to Spine Care in Ontario advocating for improved conditions for adult patients requiring complex spine surgeries and fair payment to spine deformity surgeons. Disturbingly, this is a nation-wide health crisis; adult Canadians with severe Scoliosis (who were not screened as children) and spinal deformities facing unjust grossly long wait-times or lack of specialists in their region. Adult complex spine surgeries are deprioritized by health ministries and hospitals and this patient group too is denied health equity and neglected.)
My Scoliosis story began when I was 15 years old (1980). I had a lung x-ray done and that x-ray indicated the curvature in my spine. I was never checked by my family doctor or in school. Initially I saw an Orthopedic Surgeon in Sarnia and was told I needed surgery. We sought out a second opinion. I then went to Dr. Bailey in London and he suggested they try an experimental electrical stimulation treatment. I wore this device every night until the age of 18. This device was similar to a TENS machine except the pads were put onto my muscles which would cause the spine to contract for 10 seconds and then stop for 20 seconds. This was temporarily causing my spine to straighten. At age 18, I was discharged from Dr. Bailey's care, and was informed that my curvature had not worsened during my final growth years and so it won't continue to curve any further. I should not have any future issues other than cosmetically.
As an adult, from time to time, I experienced severe muscle spasms that would put me out for days to weeks. I usually was able to manage them with heat, massage, topicals, prescription muscle relaxants and pain medication. Only once was I hospitalized. I had 3 normal pregnancies and deliveries when I was in my 30's. All were delivered by Midwives. Two were natural deliveries and one was even delivered at home.
In 2014 (age 48) I required a major open abdominal surgery for severe GERD. At that time I had no idea it was likely being caused by scoliosis. I had no idea if my scoliosis curve had increased at this point. My family doctor was not monitoring it. In 2016, opened again to repair a double incisional hernia. I had lost my core strength at this point due to 2 major open surgeries. After these surgeries and menopause, I suffered from significant pain and I was losing my mobility quickly. I now required a walker or cane to get around. I had a porch and chair lift installed in my home, to manage stairs. I also used a mobility scooter to manage any walking over about 50 meters. My pain was Chronic and I could only function a few hours a day. My family doctor finally did an x-ray and CT scan which identified significant damage to my spine. My lumbar curve was now around 60 degrees. I now had arthritis in my spine, feet and knees. I now understand that this OsteoArthritis is likely due to the wear and tear on my joints being used differently, due to my Scoliosis. My spine also showed severe lumbar disc damage (bone on bone), Degenerative Disc Disease, stenosis, etc.
My family doctor was unaware of who to send me to. He initially sent me to a local Pain Management Clinic. My first (and only) visit, the Orthopedic doctor told me that Scoliosis doesn't cause pain, he wanted to do spinal injections and use their Pharmacy's prescription cream for $275 a month. Then he sent me to a Neurologist that told me I shouldn't even consider surgery because they will just break my back apart and try to put it back together. Eventually convinced my doctor to send me to a pain doctor in Toronto. Tried pain management and nerve ablation. After my own extensive research I found out about Dr. Stephen Lewis. I saw him in March 2020 and got on his surgical wait list. In August 2023 (age 57) I had a fusion from t10-pelvis and 2 lumbar cages put in. I was given a new lease on life. I can now walk without a cane or walker and rarely need a prescription medication for pain.
Debbie was also interviewed in CBC Investigates Patients wait in pain as a surgeon fights to get paid - all in a battle over health-care dollars June 25, 2023 by Lauren Pelley. "Debbie Powell, who has severe scoliosis that causes chronic pain and mobility issues, had been on Lewis's wait list for three years..."[He] keeps saying I am still young and wants me to have as much mobility as possible after surgery," she said, by email. "Yet myself and many other adult patients continue to wait."
At the age of 12, I was sitting at my dining table when I suddenly felt uncomfortable sitting in the hard-backed chair. I reached back and noticed that my lower back was sticking out significantly on one side. I told my parents and they felt for themselves and then decided to take me to see a chiropractor. After having x-rays done, it was discovered that I had an S-curve with the largest angle being 24 degrees in my thoracic spine. Surgery was not discussed and it was decided that I would get frequent chiropractic adjustments and follow up x-rays to monitor my treatment. My curve never improved and only slowly increased in degree over time. I was never monitored by a spinal specialist.
Over the years, my discomfort progressed but I always managed to get through with regular trips to the chiropractor, massage therapist, physiotherapist, osteopath, etc. Eventually all of these methods stopped working and my pain became unbearable. I have two young children and I was suddenly unable to walk, or attend any of their activities. I missed weddings, funerals, birthday parties, and the list goes on. Daily, I succumbed to a recliner with a heating pad in order to avoid the shooting nerve pain in my thoracic spine and into my chest and arms.
I frantically began looking for a solution in Canada, only to be declined care over and over again. One orthopedic surgeon told me scoliosis did not cause this type of pain and I must have an auto-immune disease. He said surgery would only make me worse. Other surgeons ignored my request for a consultation or flat out told me they were too busy to take me on as a patient. I began calling and emailing clinics in Canada for private care, only to be told time and again that they do not deal with complex spinal cases like mine. I called hospitals and clinics in the States only to be told that I needed American insurance or else it would cost me upwards of $250,000 for this surgery. This was when I began to feel desperate. I was suicidal, could not sleep, cried most of the time, as I watched my family leave for another event without me.
Finally, I found a support group on Facebook with people who had similar stories to mine. I came across other Canadians who had taken the huge leap of faith and traveled to Germany for surgery for themselves, or their children. I reached out to a few of these people and began formulating a plan. I researched and vetted numerous surgeons in Germany before deciding to contact a few of them. The immediate responses were amazing and full of care for my needs. One surgeon even emailed me personally in order to review my images and give me some feedback, along with an action plan. That solidified it, he was my guy. After speaking back and forth and eventually having a video conference with him directly, I booked my surgery for four months later. What a difference from the care provided in my own country.
I am now a few days shy of my one year post-op date and I could not be happier with my results. I can walk freely, I don't take any medication on the daily, and I attend everything my kids are involved in. I am in school to begin a second career and I eagerly anticipate being able to work full time in the near future. I continue to see a physiotherapist multiple times a week to gain strength and flexibility back, but I cannot complain. I am about 80% fused and all of my previous pain is gone. Most importantly, I got my life back.
It breaks my heart that other Canadians are suffering and perhaps don't have the opportunity or means to leave the country for this surgery. Pain needs to be taken seriously and we need more options for proper care. Early screenings would be a huge benefit to ensure young people are getting the care they need and can potentially avoid a future major spinal surgery.
In spring of 2021, during the pandemic when my son was just shy of his 13th birthday, I noticed that his hips appeared uneven. At first, I just thought it odd, but when I noticed it again several weeks later, I did some online research and immediately made an appointment with our family doctor, suspecting scoliosis. An x-ray confirmed a lumbar curve of about 35 degrees and we were referred to see an orthopedic surgeon at the local children's hospital. I knew that time was of the essence in doing something to address the curve, and the wait for an appointment would be at least 4 months, if not longer. Fortunately, I found out that a friend had been through a similar journey with his daughter not long before, and he was able to provide us with some guidance and support which was not something that he had had the benefit of having when his daughter was first diagnosed.
While we waited for the appointment with the orthopedic surgeon, my son had a consultation at the local scoliosis physiotherapy centre where they practiced the Schroth method. My son began physiotherapy within two months of diagnosis. It was also advised for him to be seen by a podiatrist to check leg length as a potential contributor to the scoliosis. Meanwhile, it took two months before we received a date to see the orthopedic surgeon, but we were fortunate to have begun treatment already. My son was fitted for a brace which he began wearing for approximately 18 hours each day, and which he wore for two years. Although the Schroth physiotherapy was not a recommendation received from a doctor, the combination of the physiotherapy and bracing led to an improvement in my son's curve. At "skeletal maturity", he was weaned off his brace and his curve was measured at 25 degrees. He will still be seen annually while he is able to at the children's hospital.
The journey was not an easy one for my son although he has been fortunate to have seen an improvement and remains pain-free. I learned as much as I could about scoliosis, but was disappointed that our doctor did not have much awareness of the condition so had little advice to give other than to "wait and see" which was not an acceptable option. I realize now, too, there is a mental health component to any diagnosis of a lifelong physical condition such as scoliosis. A holistic approach is required for treatment which includes coordination and communication between a patient, their family and friends, the community and professionals including family physicians, physiotherapists, orthotists, orthopedic surgeons and even mental health practitioners. A greater awareness within the community of what scoliosis is can help with earlier detection in addition to removing the stigma associated with wearing a brace to correct the curve.
As I supported my son through his treatment, I saw the mental toll it took on him. Scoliosis doesn't go away. It's something patients are aware of every day, and it's something they need to monitor throughout their lives. I now advocate to raise awareness about scoliosis and the signs to look for, and to have regular screening of girls and boys from ages 9-13 to help catch those curves early, before children reach their growth spurts and before they reach skeletal maturity.Detecting and treating scoliosis early can help reduce the need for surgeries. Those patients with moderate curves can be provided more non-operative treatment options which can help prevent the need for surgery. Screenings in Canadian schools were discontinued in the early 1980’s, but we now have over 40 years of advances in detection, bracing and treatments so we know that catching scoliosis early leads to better outcomes for most patients. And raising awareness about scoliosis in patients of all ages will help drive better treatments for adults as well as it becomes more clear which options may be available to them.
Our scoliosis journey began in 2019 when our 9-year-old daughter was diagnosed with adolescent idiopathic scoliosis with a moderate 35 degree curve. I had noticed something off about how my daughter looked in her swimsuit, and we were fortunate to be able to obtain an appointment with the Orthopaedic department at the IWK Children's Hospital a short time later, because they had been following our daughter for another condition. The team at the IWK told us how lucky we were to detect scoliosis early: had we waited longer for a consult, our daughter may have already been in surgical range.
Over the last 4 years, our daughter’s resilience, and commitment to do whatever possible to avoid surgery has been admirable. She has been able to delay scoliosis progression via full time TLSO brace wear, Schroth physiotherapy and regular osteopathic adjustments. To my great surprise and disappointment, none of these treatments are covered by NS provincial health care! With the lack of financial support for preventative treatment, it is no wonder that the surgical wait times in Nova Scotia are so high.
Scoliosis needs to be detected before it can be treated.I have learned that additional scoliosis
education and training is needed for family physicians so that scoliosis screening can become a
mandatory part of clinic visits. With the lack of family doctors across Canada, the in-school
screening program for scoliosis should also be re-considered.
My family's experience shows that early identification and treatment of scoliosis can delay and
hopefully prevent surgical outcomes. This is better for the patient, and for the allocation of scarce
health care dollars.
Lori B
When we first heard the word scoliosis, we were in complete shock. Disbelief. Confusion. Where did this come from? No one in our family had ever been diagnosed with it, how could this be happening? We cycled through guilt, grief, helplessness—wishing we could somehow take this burden away from our daughter but knowing we couldn't. We had to rely on specialists, support groups, and anyone who understood what we were going through.
That's when we discovered Curvy Girls, a U.S.-based scoliosis support network with a local chapter for youth in Cape Breton, NS-hours away from us. Desperate for information, we purchased Straight Talk, a book they recommended. Each of us read it independently, searching for answers, trying to grasp the journey ahead, all while recognizing that the biggest challenge of all was how our 12-year-old daughter was processing this news herself.
While Straight Talk provided valuable insight into what other youth and their families had experienced, it was also heartbreaking to read about the struggles of those who did not require surgery. Some had to endure full-time bracing, wearing an upper-body brace for up to 24 hours a day. The emotional and physical toll was devastating-especially for those who were not properly fitted, suffering internal damage and chronic pain due to their braces. We couldn't imagine what those children went through. Reading their experiences left us deeply moved and even more determined to support our daughter in every way possible.
As parents, we did our best to keep an open dialogue, discussing research, asking questions, and sharing our fears and hopes as a family. By February 2019, we had compiled a list of concerns to bring to our local specialist, who was also our daughter's surgeon. He was professional, compassionate, and took the time to explain everything in a way we could understand.
In early 2020, as we prepared for her spinal fusion surgery, our daughter-who loved school asked if it could be postponed until summer. Dr. Ron El-Hawary approved the change, moving it to July 14, 2020. Little did we know that COVID-19 would turn the world upside down.
When the time came, hospital restrictions meant that my husband and I couldn't be in the same room as she was taken into surgery. He waited in the parking lot while I stayed with her in the pre-op area. We kept him on speakerphone to include him as much as possible, but when she was wheeled into the operating room, we were left in a terrifying silence-waiting, worrying, hoping. The longest eight hours of our lives. Every "what if" ran through our minds. Spinal surgery. What if something went wrong? Paralysis? Complications?
Finally, we got word-she was in recovery. A huge sigh of relief, but we knew the journey wasn't over. Once she was admitted to the post-op floor, my husband could finally join us. That moment- when we were all together again—was overwhelming. Many tears were shed. Relief. Gratitude. Hope.
Despite everything, our daughter amazed us. She conquered every post-op milestone-from turning, walking, and managing pain, to astonishing the hospital staff with her resilience. She barely used the self-administered pain pump, and within 72 hours, she was discharged, something almost unheard of. Even then, we questioned the surgeon; Was she really okay to go home? He assured us she was.
Recovery at home meant strict guidelines-positioning support, limited movement, and patience. But she did it. Five years later, she's thriving. She gained 1-2 inches in height, has some physical limitations (no high-impact sports), but otherwise, she's living life on her terms. And we, as her parents, couldn't be prouder.
Throughout this journey, we learned just how invisible scoliosis awareness is. When we finally started talking about it-sharing our story with friends, family, and colleagues-we were surprised by how many people came forward, sharing their own experiences or those of loved ones. Yet, why is no one talking about scoliosis? It affects so many, especially our children. That realization led us to action.
Wanting to give back in a big way, we collaborated with the IWK Foundation and IWK Health
Centre to launch
When choosing a date for our tournament, July 14th was the only choice that felt right. This was the day our daughter had her spinal fusion surgery-a day that changed our lives forever. Each year, we host our tournament as close to July 14th as possible, honoring her journey, her strength, and the resilience of every child affected by scoliosis.
In July 2025, we will host our third annual tournament, aiming to exceed last year's $16,000 donation. Beyond fundraising, our goal is advocacy-bringing back preventative scoliosis screenings in schools, raising awareness, and ensuring no family feels alone in this journey.
There's still so much more to do. So many families are facing this diagnosis without support, wondering where to turn. But together, we are changing that.
We see you. We hear you. You are not alone.
With hope and gratitude,
Bryan & Kandra Pettigrew
Founders, Swing for Scoliosis Society
http://swingforscoliosis.ca
SCOLIOSIS - In 1991 myself, my family and the social circle, were jolted into understanding this new word, condition, and thrust into an unknown system of appointments, x-rays, research sessions as a subject and ultimately surgery. This condition wasn’t discussed in school, at the annual checkups, by any institutions or community. For a child, it is not just physically but mentally impacting as it comes with confusion, chronic pain and given that little is commonly known or understood, it is isolating. Society, biology, yoga, furniture, clothes, et al are all designed for symmetrical people. You need surgery, without it - your lungs will collapse on themselves by the time you are thirty -I did not know until my adulthood the mental impact of these words, of the unspoken indication of possible death without surgery and the risks that must be accepted to have a major surgery. It unknowingly will shape the child & the adult.
I started to share my story looking for a group of like-minded individuals, we quickly aligned on the gap in community, education, awareness and formed Scoliosis Alberta Society. Later I found myself in the parental role and luckily armed with the knowledge about scoliosis and screening I could see and identify the asymmetry in how my son as he was growing. He didn't have the pain that resulted in my own diagnosis, but I knew that with a forward bend test there was clear indication of asymmetry that we needed to initiated the course of action that would lead to a scoliosis diagnosis.
As a parent it is a completely different sense of pressure to not be wrong in the decision for your child, I starved for even a better understanding and exposure to alternative treatment and like many others in our community experience a state of anxious chaos. To ease the helplessness I felt during wait times I turned to understanding complimentary treatments to the standard clinical protocols. I was a detective, manage an overwhelming amount of information as I educated myself and still hoped it was the best decision with an ultimate goal to keep my child away from the surgery I had faced.
I believe from my experience both as patient and parent that early screening and early detection is the first step to education for the general public. This will lead to awareness of why they are being screened and that scoliosis may affect their child. The importance is when caught early and complimentary treatments, the child is more likely to avoid surgery. Those community members who I support with a new diagnosis feel lost, sad, anxious, and bewildered. I am confident with screening programs that will bring broadly an increase in awareness and education, we can give confidence and empower families as they learn to live with scoliosis whatever their outcome as some effects of scoliosis will never go away.
The goal of writing this testimonial to is to share that as a patient, parent and champion, I have had to navigate mental health, chronic physical pain, the lack of available knowledge and support. I was fortunate to have the support network I did with my son’s diagnosis, however, that is not the common scenario for most families. We need to help educate, build processes and policies to ensure every child is screened as early as possible and multiple times as they grow should they have any risk indicators. The old research suggesting screening does not make a difference has been debunked yet, we do not screen when many countries do so for every child. From my own experience with no screening or education, I had suffered multiple facets of pain, was diagnosis late enough that I received an immediate recommendation for surgery. My son and many children do not have pain or may not know what to voice, if they do. Without the knowledge I had, I am grateful to have personally screened him early, employ alternate and complimentary treatments to the standard clinical protocols.
To date, he does not require surgery. Every child should have the same chance.
Cynthia
Patient and Parent; President, Scoliosis Alberta Society
http:/scoliosisalberta.ca
I have been living with scoliosis for 35 years. I am a mother of two children who were diagnosed with scoliosis, and I am a physiotherapy technologist specializing in chronic pain. I also treat painful scoliosis cases through the Schroth method, with P2 certification, the highest level. Here is my testimony:
At 13, after a knee injury that forced me to stop dancing for six months, I was followed by several healthcare professionals, but none examined my back. A friend in my dance class noticed a change in my posture when I returned. My teacher performed a scoliosis screening test, which was positive. I was then referred to an orthopedic specialist, and X-rays confirmed a moderate to severe idiopathic scoliosis with a 30° thoracic curve and a 25° lumbar curve.
I quickly started specific physiotherapy (RPG) and regular follow-ups, but I never wore a brace. In hindsight, I know I needed one. I still wonder if an earlier diagnosis and proper treatment would have changed my journey and quality of life. During adolescence, I was teased for my hump, but I had an active, pain-free youth. It was the following years that became more challenging.
Unlike many cases of adolescent idiopathic scoliosis where curves stabilize after growth, mine continued to progress. At 24, I met the criteria for surgery and underwent spinal fusion with Harrington rods across ten levels, along with a costoplasty to correct my hump. I was extremely stressed about waking up paralyzed from this invasive surgery, especially since I worked in physiotherapy and understood the risks. That was the first thing I checked upon waking up. Despite a cerebrospinal fluid leak and a mild lung issue, the surgery went well, and I recovered faster than expected for my age.
For three years after my first surgery, things went well: my curves reduced to 20°. But a month after my first childbirth, I began experiencing intense pain, especially at night, which made life with a newborn difficult. My doctor thought it was hormonal or fatigue-related. An initial X-ray showed nothing. Only after six months, when my scar opened, was an osteomyelitis, rod break, and screw failure discovered. I had to undergo emergency surgery, 700 km from home, because there no scoliosis orthopedic surgeon in my area. I had to abruptly wean my baby to go.
The surgery, though shorter, was more complicated than the first one: I was severely infected, my muscles were necrotic, and I lost a lot of blood. They had to finish the surgery in an emergency, despite blood transfusions. All the hardware was removed and not replaced since my spine was already fused. Unfortunately, a drain was sewn in by mistake. When they tried to remove it, my muscles reacted violently and remained in spasm for a year. I could move after several hours of warm-up, but at night, while resting, I couldn’t even turn over in bed on my own — at 28, waking my partner up for this was very humiliating.
From the first follow-up X-rays after my second surgery, a significant deterioration in my curves was noticed. Quickly, I was once again eligible for a third surgery. Not wanting to go through another major intervention, I decided to stop seeing an orthopedic surgeon and ceased X-ray follow-ups. Since I had no pain at the time, I chose to continue on my own.
Being scoliotic, I knew my children were at a higher risk of developing scoliosis due to genetics. As a mother of three, I was horrified at the thought of one of them going through the same experience I did. As a physiotherapy professional and a scoliotic mother, I regularly performed scoliosis screenings on my children from a young age to detect it as early as possible.
At 7 years old, I noticed an anomaly in my daughter during the forward bending test. After consultation and X-rays, she was diagnosed with functional scoliosis, with a mild 7° curvature and no vertebral rotation. She started specific physiotherapy exercises (RPG), which quickly brought her curvature to zero. Today, at 22, she has no trace of scoliosis. Without this screening, she likely would have ongoing issues.
I thought all my children had escaped scoliosis, but when my youngest, aged 15, took a hard impact during a hockey practice, I discovered, during the forward bending test, that he had a positive screening. After consultation, an X-ray revealed a structural scoliosis of 17° thoracic and 7° lumbar. He started specific physiotherapy exercises (Schroth), which reduced his scoliosis to 15° and eliminated his cervical and lumbar pain. Today, at 17, he competes in high-level sports, which he probably couldn’t have done if his scoliosis had continued to progress.
As a mother, I diagnosed scoliosis in two of my three children. Not every child is lucky enough to have a mother who knows the screening tests and can act quickly to provide appropriate treatment. This test, which takes less than two minutes, could make a real difference for hundreds of children across Canada.
Over the years, despite my active life with three children and my participation in sports competitions, I began to feel more and more hunched forward. The later in the day it got, the harder it was to stay upright. Numbness and pain gradually appeared. My head was increasingly tilted forward, and I sometimes felt as if my neck would give way under the weight of my head. I frequently felt my ribs touching my pelvis and overlapping. I also went through a period of severe neuropathic pain, requiring medication that slowed my nervous system and affected my cognition. It was a tough time, and my mood, patience, and family were severely tested.
I work in a regional clinic specializing in chronic pain treatment. At that time, we had a patient suffering terribly from her scoliosis but, for medical reasons, could not undergo surgery. Despite our usual success with patients, we couldn’t help her. After reviewing the literature, we discovered the Schroth method, a physiotherapy technique specifically for scoliosis. Our team got certified, and we began using this method with her. It made a huge difference for our patient. She was able to reduce her narcotics, start walking again, sleep better at night, and although still affected, she regained a much better quality of life.
During my Schroth certification, I took the time to analyze my own condition and realized it was worse than I had thought. In addition to my scoliosis, I now had a significant thoracic kyphosis, even though in my adolescence, my thoracic region was too flat. I decided to try the Schroth method for myself — and it was, without a doubt, the most beneficial thing for me in 35 years. My main goal was simply to stop the deterioration, but I achieved much more: my posture significantly improved, all my pain, numbness, and strange sensations disappeared in the same week. I even grew 4 cm thanks to the improvement in my posture!
My highly experienced Schroth physiotherapist, who is at the forefront of the field, also recommended combining the exercises with wearing a brace to consolidate the improvements and better integrate the new posture. What I find somewhat ironic is that I was never offered a brace as a teenager — and now, as an adult, I find myself wearing one! The use of braces for adult scoliosis or kyphosis is still not widely studied or known, but for me, it’s a valuable option to avoid a third invasive spinal surgery.
For me, the brace acts like "external rods": it helps me stay upright, while being removable, non-invasive, and carrying minimal risks. Some fear muscle atrophy, but after two years, I haven’t noticed any, likely due to my daily 45 to 60 minutes of Schroth exercises. Honestly, even if there was some slight muscle loss one day, I would much rather that than undergo a third major back surgery.
I understand that 35 years ago, there was a significant lack of knowledge, studies, education, and communication between scientists and professionals. I still don’t understand why this is still the case today. I find the work of the Canadian Scoliosis Screening Coalition, crucial in addressing this issue. I hope politicians will work together with the coalition for the benefit of Canadians.
Throughout my journey, I’ve seen how a late diagnosis can change a life. Too many children in Canada aren’t screened for scoliosis on time, leading to delayed treatments or surgeries that could have been avoided. The numbers keep increasing, and this deeply concerns me. With early screening and care following the well-established guidelines of SOSORT, many young people could avoid heavy interventions with significant physical, psychological, and financial consequences.
Today, with my atypical journey, I don’t know what the future holds. Will I be able to live an active retirement, travel, enjoy my children — and maybe one day, my grandchildren? I often ask myself: what if I had been diagnosed earlier, what if I had had a brace at the right time?
What I wish most is that today’s children have this chance: to be screened early, whether it’s at school, with their doctor, or another healthcare professional. They should receive the right treatments at the right time, be properly guided, supported, and benefit from everything research and experience have taught us.
And if it were your child or grandchild who hadn’t been diagnosed in time, who hadn’t received appropriate care at the right time, and who now had to undergo surgery after a long delay... how would you feel ? What would you do actually?
My name is Miaya, and I discovered I had scoliosis the way many do-through a late diagnosis found by a family member. My mom noticed a hump in my back when I bent over to tie my shoe. Concerned, we went to a clinic, where I was scheduled for an x-ray. The doctors mentioned it could be scoliosis or a mass in my lung, making that first appointment incredibly stressful. At the time, I was in seventh grade and had two classmates with scoliosis. Given the two possibilities, I suspected scoliosis, as I recalled experiencing back pain during the same activities that triggered pain in those students. My family also recalled complaints of back pain, which we had attributed to growing pains.
Once diagnosed, I was referred to SickKids for further evaluation. After EOS x-rays, MRIs, and a physical consult, I learned my scoliosis curve had already reached a surgical size. At 12, being told I would need spine surgery felt like my world was crashing down. Bracing was the next option, so I was fitted immediately. While wearing a brace came with challenges—discomfort, sleep issues, and unwanted attention from peers—I wore it consistently for a minimum of 20 hours a day, knowing it was my best chance to delay or avoid surgery.
Despite my efforts, my aggressive curve continued to progress, causing significant pain. As a dedicated student, missing school and activities was another challenge. I spent the beginning years of high school, teaching myself lessons and trying to study being wrapped in heating pads, A535, and in tears. I was very fortunate, that my parents were able to support me going to two massages and two osteopath appointments per week for relief.
When my family discovered Schroth Physiotherapy, we began travelling across Ontario every five weeks for intensive sessions with Andrea Lebel in Ottawa, while also following a daily at-home Schroth program. This was life-changing, allowing me to manage my pain and sparking a passion for helping others with scoliosis. Eventually, we moved to Ottawa for a semester so I could do a co-op with Andrea and follow the program consistently. However, despite daily physiotherapy and over two years of bracing, my curve progression did not halt. By 2018, I realized that if I wanted to pursue my dreams—becoming a physiotherapist and one day being a mom who could hold her children without pain—I needed surgery. The mental health toll of making this decision is one of the reasons I now volunteer as a peer mentor for scoliosis patients through the Scoliosis Resource Centre.
I remained on the waitlist for nearly two years before undergoing spinal fusion surgery in 2020, just days before aging out of the children’s hospital. Even at 17, the surgery was, to say the least, daunting, but I was fortunate to have an incredible team at SickKids and unwavering support from my family and healthcare professionals.
Now, four years post-operation, I have no pain, completed my undergraduate degree, and am continuing my education to become a physiotherapist. I advocate for scoliosis screening because early detection could have made noninvasive treatments more effective and reduced the challenges I faced. Research now supports bracing and PSSE physiotherapy when scoliosis is detected early, yet accessible preventive measures remain underutilized. The cost-effective, 30-second Adam's Forward Bend test is an easy assessment that could reduce emotional, physical, and financial burdens on patients and families in Canada. Screening would also reduce the financial burden that late diagnosis costs the healthcare system. I advocate for those who were not as fortunate, for improved preventive healthcare practices for the next generation of scoliosis patients, and for my future children, who will be screened annually to safeguard them from this critical gap in Canada's current preventive healthcare system.
Read Miaya's important essay Scoliosis Care in Canada 2023.
Panicked and stressed out parents have posted on the public Facebook group 'Canadian Scoliosis Group', (over 2400K users (August, 2024 was 1k) and growing) searching for treatment for their children, this is one typical post from 2024;
"Hi, my daughter is currently 17 years old. She was diagnosed at 15 with a cobb angle of 54 degrees. It was determined at that time that she was fully grown and the specialist said it would not get any worse. No brace was offered as we were told it would not provide any help for her. A year later in 2023 she got another xrays that says her S-shaped curve is now 61 degrees. Went back to the specialist who said the curve is what it is and he is not concerned about it but as a mom I'm very concerned about it. He said surgery is not an option and wouldn't fix anything for her but I've read that surgery is required after 45 degrees, so I wonder would surgery help her? My daughter has been in chronic pain now for 2 years and can't enjoy daily life activities like getting through a full day of school or even walking an hour around the mall. I am at a loss of how to help her, we live in a province NL where there is only 1 specialist for children.. I need some help or guidance maybe you or someone you know have been put into a similar situation because now I've been told that she is to old for child care and not old enough for adult care. Not only in my province but Toronto Sick Kids said the same on Thursday when I took her there. So she basically falls off the health care system until she reaches an adult but technically she is still a child. I just don't know what to do for her anymore and I'm worried about what her future looks like. If anyone has any advice, please let me know below is her first xrays and a picture of how she stands".
And another post; "Anyone from Toronto? My son has
From Saskatchewan - "does anyone know if there are any supplemental health coverage for our kiddos through the government? Our 2 insurances through work only pays according to "standard" cost for physio so instead of the two working together to pay for the full cost of initial treatment, they only pay up to the standard cost which is considerably less...."
From BC (Oct , 2025): I'm in Vancouver BC & surgery wait times are 2 years while my daughters scoliosis has been worsening.
She's 14 & in pain daily...
From BC (June 3, 2025): 2 years since my son has been on the surgery waitlist. He’s at an 80 degree and
Where do u live? Which hospital and surgeon? My daughter was 92 degrees (s-curve) and got her 2 stage spinal fusion surgery after waiting 20 months. We were at BC Children’s.
(There are hundreds of heart-breaking posts from Canadian adults, below are just a few)
"Anyone here have any pain/symptoms related to a Cobb angle of 19 degrees or similar? Thanks in advance."
Reply: "The doctors will tell you it's mild and ignore it, that it shouldn't cause you pain.
But it does! Sometimes excruciating. They first said it was Fibromyalgia because they couldn't
explain the widespread paim. Never mentioning Scoliosis. Don't ignore it. It's real.
I can't offer you any solutions other then a heating pad, topped with an electric massager,
topped with a weighted blanket brings tremendous relief.
Good luck to you."
"I currently reside on Prince Edward Island and was previously followed by the IWK in Nova Scotia until I aged out of their care. I have a 37 degree spinal curvature beneath my right shoulder blade, diagnosed at approximately 12 years old. I am now 23, and my pain has significantly worsened to the point where it is difficult to get through the day. I experience severe back and hip pain, as well as chronic exhaustion."
I've been on a wait list for 4 yrs just to see a doctor (that I previously saw before), and then told me it will be another 3 yrs until I get that appointment. This is in Saskatchewan for me. It's a f#@$... joke. Sorry not sorry but my level of pain & frustration has hit the roof.
