5 Tips From Someone Who Knows What It Feels Like to Have Scoliosis
Key takeaways:
As a teen, Michelle Andrade dreamed of becoming a professional dancer.
A scoliosis diagnosis changed the course of her life.
Nearly 20 years after spinal fusion surgery, she still advocates for her health. These are her tips for others.
Michelle Andrade was 14 years old with dreams of becoming a professional dancer. That’s when one of her ballet instructors noticed something wasn’t right with her posture.
“I was crooked,” says Michelle, now 34, a publicist in West Hollywood, California. “That’s how they discovered I had scoliosis.”
One year later, with two significant curves in her back — one at 50 degrees and the other at 30 degrees in the opposite direction — Michelle had spinal fusion surgery. Doctors fused titanium rods between the bones in her back that started about one-third of the way down to the small of her back — or, in medical speak, from vertebra T3 to vertebra L2.
For Michelle, a dance career was now unthinkable. But with a little time, she realized she had an opportunity to try something completely different.
“There was a lot of loss and grief, but then I gained a new path in life, to become somebody else,” she says. “I didn’t know then what that was going to be — nobody does when they’re 15 — but that was OK.”
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What is scoliosis?
Scoliosis is a curvature of the spine that develops most often during early adolescence. It affects about 2% of the population, roughly 7 million Americans, according to the National Scoliosis Foundation. Even though it can develop in infancy or early childhood, the primary age for onset is 10 to 15.
Most scoliosis cases are mild, require no treatment, and have no known cause. Some can be addressed with physical therapy exercises.
“Most people have a slight degree of curvature. Nothing in nature is perfect,” Michelle says. “It’s all about the level and degree.”
Coming out of surgery almost 2 inches taller
Michelle went into the operating room standing 5 feet, 3 ½ inches tall. She emerged at 5 feet, 5 inches. Some parts of her back are forever numb, while others remain hypersensitive. The rods connecting her vertebrae do not set off metal detectors.
Almost 20 years since her spinal fusion surgery, Michelle says she can feel “the curvature has gone back a little.” Her right shoulder also rolls a little more forward, and her right scapula sticks out a bit more, but that’s manageable. She sometimes wears a shoulder harness to help keep her back straight when she’s sitting.
Michelle says she is thankful and knows it could be a lot worse. When she was diagnosed, doctors shared “worst-case scenario” photos.
“I’m so grateful that I had this diagnosis and surgery when I was young and able to recover,” she says.
Tips for managing scoliosis from someone who has been there
Here are Michelle’s tips for dealing with a scoliosis diagnosis, recovering after surgery, and taking an active role in your own health.
1. Scoliosis is not going to ruin your life
In Michelle’s case, she had to readjust to a new normal, but once she did, it excited her.
“There was a lot of loss and grief, but then I gained a new path,” she says. “Whatever restrictions you have or abilities you lose, they’re not crippling. They’re not the end. They’re opening a door to something else, so stay open, hopeful, and curious about what that’s going to be.”
2. Get comfortable
Pillows matter, especially after surgery, Michelle says.
“It’s all about finding the right pillow combination so you can be comfortable,” she says.
After having her son, Michelle was introduced to a breastfeeding pillow that circles most of your body like a belt. It can double as lumbar support. A heating pad is nice too, she says.
3. Be patient
Healing takes months, not weeks, Michelle says.
After surgery, “it felt like my whole mid- to low back was a concrete block. It felt stiff, like I could only move my shoulders,” she says. “The recovery process was a long, gradual, relaxing of that block. It takes time.”
Michelle was mostly bedridden for a month after surgery. A high school sophomore when she had her surgery, she missed weeks of school, but teachers sent lessons to her home.
“I had nothing to do but sit in bed, watch ‘Friends’ DVDs, and do my homework,” she says.
4. Let your medical team know how you’re feeling and what you need
If you’re in pain, tell your doctor, Michelle says. If something doesn’t feel right, bring it up.
“Don’t suffer through it because there might be something else they can do,” she says.
She recommends a cautious approach to pain medications. Since she was a teen at the time of her surgery, her mother regulated her medication use.
Michelle also suggests applying the same “let people know what you need” philosophy to other areas of your postsurgery life.
“Call your friends and have them come over,” Michelle says. “When you’re stuck in bed for a long time, it gets really lonely, and one of the best things to cheer me up was to have my friends come over and visit. People always say, ‘Let me know if you need anything,’ but they don’t know what you need unless you ask. This is something they can do.”
5. You are responsible for your condition
Own your health, Michelle says. If doctors recommend specific exercises or stretches, do them regularly.
“That’s so important, not just immediately after [surgery] but in the long term. I really make my stretches a priority every morning,” she says.
Michelle enjoys taking yoga and Pilates classes. She tells the instructors ahead of time that even though she may look crooked and may not be able to perform certain moves, she’s not in pain.
Ask questions, Michelle says. Before her pregnancy, she worried that her growing belly would damage or strain her back, but she learned that this wasn’t the case. Asking questions and advocating for her health are things that she’s held on to long after her surgery.
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