no more pain: life-changing surgery gives young woman with scoliosis her life back
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liana hart is pain-free thanks to spinal fusion surgery to treat scoliosis performed by renowned surgeon dr. stephen lewis.
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liana hart has lived with both scoliosis and congenital myasthenia for most of her life. due to her scoliosis, she has been forced to contend with chronic pain caused by the curvature in the spine, with her myasthenia compromising her lung function and ability to breathe.
while the conditions are unrelated, the more her scoliosis worsened, the harder it became to take in enough oxygen due to pressure on her lungs from her spine.
today, liana is a 24-year-old master’s student at mcmaster university who continues to grapple with the symptoms of her conditions with one small difference: she had spinal fusion surgery to correct her scoliosis, leading to significantly reduced pain and relieved pressure on her lungs.
the surgery was performed by world-renowned spine surgeon dr. stephen lewis, who works within the university health network (uhn) and was the first of five surgeons to say yes to liana’s request for the complex procedure. the other surgeons cited her other health issues, including myasthenia, as reasons for their denial.
“it’s like medically if you read my chart, i sound way worse than i am, liana said. “my curve is … right behind all the good, important organs.”
liana knew that it was never a matter of if she would need surgery, but when, and at the beginning of the covid-19 pandemic, she got a resounding yes from dr. lewis – the time had come to have the life-changing surgery.
growing up with scoliosis and myasthenia
when liana was born, she wasn’t breathing. she spent the first eight months of her life in the hospital, being tested and cared for while they tried to figure out what was causing her reduced lung capacity.
she was ventilated, had a tracheostomy put in to help her breathing, and was eventually able to go home.
“they didn’t expect much from me,” she said. “they didn’t know if i would walk or talk or anything.”
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when she did start hitting those milestones, things were looking up, but her breathing was still not where it should have been. she was also diagnosed with scoliosis as an infant, but it didn’t become a more significant issue until she hit puberty. at that point, she still didn’t have a precise diagnosis as to what was causing her lung issues.
liana had to monitor her undiagnosed myasthenia every six months, and when she was 13 years old, she had a genome test that led to a definitive diagnosis.
“that’s right when you start wanting to be independent and go out with your friends and all of that,” liana said.
the constant pain caused by scoliosis that ramped up around the same time she was diagnosed with myasthenia only worsened her ability to participate in everyday activities with friends, making living a typical childhood life out of reach for liana.
“i would go (out with friends), but then 15 minutes after walking around the mall, for example, i got a lot of pain in my back, and i’d have to (be like) ‘alright, i need to sit down,’” she said. “so, it affected me a lot that way.”
with her new diagnosis and scoliosis worsening during a crucial developmental time, liana was forced to plan her whole life around both conditions. she couldn’t keep up with her peers, participate in recess or gym classes, or do more than one activity in a day due to exhaustion and pain.
“my whole life has been about preserving my energy and, like, what can i do? what can i accomplish? like, ‘hey, if you do this, you can’t do that. if you do that, you can’t do this,’” she said. “it’s just been planning, making sure i don’t overexert myself.”
liana was lucky enough to have a solid social circle in elementary school. at that point, all the children she was around knew her since kindergarten. her peers were supportive and understanding of her limitations, but all that changed when she reached high school.
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“i just focused on school, and i was just alone. i had no friends in high school,” she said, describing that it’s much harder to make new friends when you have to disappear for a week at a time to deal with health, or you miss out on specific aspects of socialization, including lunch in the cafeteria.
now that she’s pursuing her master’s in psychology, liana looks back on her experience and states that “it’s fine” because of where she is today.
finding a surgeon who would say yes
liana knew she would eventually need to undergo a procedure known as spinal fusion to correct the curvature in her cervical spine. she was always followed and monitored to see how the curve was growing and changing as she went from child to teen and then to adult.
because her body was going to change a lot throughout those years, her care team put off the surgery so that they could tackle the curve after she had stopped growing. she recalls that at the time, her “back wasn’t a priority” because of other issues.
she bounced around different hospitals and care centres, waiting for when the day would come when she could finally get corrective surgery, and when it finally did, she had a tough go at finding someone willing to perform it.
she went through the hospital for sick children (sickkids) in toronto to try to get the surgery, but they were not comfortable with it. then, three others, all of whom told her different variations of “it’s a risky surgery, and we don’t know how you’re going to handle it.”
she was referred to dr. lewis by one of the surgeons who wouldn’t perform the procedure. while waiting for that appointment, liana and her family had prepared themselves to head to the united states if they got another no because, at four to five surgeons, her hope for a yes was waning.
dr. lewis didn’t deny her the surgery, though. he welcomed her with proverbial open arms, even going so far as to make it seem like “everyone else made this huge deal.”
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undergoing a life-changing surgery
when liana got her yes from dr. lewis, he confirmed what she had already known: her medical state looked much worse on paper than it is, and she was more than able to handle a surgery of this nature.
“he was confident in it,” liana said.
together, they addressed each concern voiced by other surgeons by taking a deeper look into how the scoliosis was affecting her and how her other conditions would affect her ability to have surgery.
“he was like, ‘we have a good team here. you know, our icu is great,’” liana said. he told her everything would be great, and the surgery wheels were rolling. she was going to have the surgery right away.
unfortunately, the covid-19 pandemic put a wrench in those plans, and she had to wait four years to actually have the surgery.
following the surgery, liana was supposed to spend up to two weeks recovering in the hospital. she had to wait until she could walk to leave and was walking within 10 days.
afterwards, she spent much of her time recouping at home, taking things easy, or going for little walks off with her parents. she took an entire year off to focus on her health.
“i thought it’d be like a huge thing, but honestly, i was pretty good,” she said.
while liana still has myasthenia and a tracheostomy, her scoliosis has been corrected. her life is still planned around her energy levels, but she no longer has to consider pain in the equation because it is non-existent.
living with chronic pain for much of her life and then being free from it has dramatically improved her quality of life.
“i have a dog. i walk her twice a day,” she said. “i can then go do something else if i want to, and i have absolutely no pain. i don’t even take, like occasional tylenol, anymore, which, before my back surgery, tylenol didn’t even help. i was in too much pain. tylenol wasn’t enough, but now, i don’t need anything.”
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she notes that her breathing hasn’t improved to the same degree as her pain levels, but a year out from the surgery, she’s beginning to notice changes.
“it (breathing) took a plummet after the surgery. of course, as i recovered, it’s starting to get better.”
liana acknowledges that there’s still a bit of recovery road ahead, and things could get even better for her other conditions, but to be finally living without pain after spending so much time basing her life around it is a blessing.
“it really took off like a lot of the daily stress and worry, and planning has greatly diminished. not being in pain is great.”
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