At age 12, I was diagnosed with scoliosis―an abnormal curvature of the spine. I was immediately prescribed a back brace, and at age 13 I had spinal fusion surgery. Back then, I didn’t even know what scoliosis was or understand what was going on. My parents did everything right; they took me to yearly checkups; I was a perfectly healthy adolescent girl. So why (or rather how) did this happen to me? The truth is, no one knows.
Idiopathic adolescent scoliosis, as it’s officially called, has no known cause. Yet roughly one to three out of 100 teenagers will develop it. About two to three percent of the population has some form of scoliosis―an estimated seven million people in the United States. It usually pops up between the ages of 10 and 14, right when kids start hitting that adolescent growth spurt. That’s when the curves tend to get bigger and more noticeable.
“People think of scoliosis as predominately a girl’s disease, but actually getting scoliosis is about even for boys and girls,” says Sumeet Garg, M.D., orthopedic surgeon at Children’s Hospital Colorado. “But for what we don’t understand, girls are much more likely to have bigger curves that need things like braces and surgery.” He adds that somewhere between seven to 10 times as many girls will need treatment than boys, even though they develop it about the same amount.
Adolescent scoliosis is typically not painful or life threatening, and it is often difficult for parents and kids to detect themselves. Sometimes there are noticeable signs: “The biggest thing people notice is waist asymmetry, where one side of the waist looks a little more curvy or exaggerated than the other side,” says Jaren Riley, M.D., orthopedic surgeon at Rocky Mountain Hospital for Children. “Or, the shoulder blade on one side suddenly appears to be more prominent than the shoulder blade on the other side.” Other signs include an uneven rib cage, sunken chest, back pain, or the appearance of leaning to one side.
“It’s hard for parents to identify since kids at this age are more private,” adds Riley. “So unless you’re at the beach or swimming pool and they reach over to pick up a towel and you see it, it’s a little bit harder to pick up on as a parent.” Trained physicians can perform a forward bend test correctly and are better able to identify problems. Riley says the most important thing is to take your child to their usual well check-up each year. Ask your pediatrician to take a look, if he or she doesn’t already do this as part of the visit. This is especially important if there is family history―although the cause is unknown, for those with a genetic predisposition to scoliosis, the risk increases by 10 to 15 percent.
Luckily, most kids don’t need any treatment. If your pediatrician notices a curvature, they will often send you to a specialist for X-rays. The X-rays indicate the severity of the curve―a spine with scoliosis will look more like an “S” or “C” rather than straight―and help determine the appropriate treatment method. For curves smaller than 25 degrees, there is usually no direct treatment, but the curve should continue to be monitored until the child is fully grown. Physical therapy―administered by a therapist trained in scoliosis therapy―or Pilates may also be recommended.
For curves between 25 and 40 degrees, bracing may be effective. But the hardest part is wearing it. “Studies tell us that they have to wear the brace for 18 hours a day for the brace to be effective,” says Riley. “Anything less than that, they may as well not wear it.” It’s a big commitment, and it can be especially unnerving for young girls―who nine times out of 10 are the ones prescribed a brace.
There is no guarantee that it will work, but it can slow the progression. “The brace unfortunately will not straighten out the curve. It will only keep it a little bit straighter while you are wearing it,” says Riley. “The big goal is to keep the curve from getting worse or to hopefully keep it less than 40 degrees by the time they”re done growing, so we don’t have to think about surgery.”
When To Do Surgery
If bracing doesn’t work and the curve reaches 45 to 50 degrees, surgery is typically recommended. “The reason we start talking about surgery at 45 degrees is that’s expected to keep getting worse as kids become adults,” says Garg. “The two main issues adults with untreated scoliosis face are more challenges with back pain than people without scoliosis, and unhappiness with their appearance.”
Spinal fusion is still the most common and widely practiced surgery for adolescent scoliosis. It can be a very scary thing having a back operation. Do your research and don’t be afraid to ask a lot of questions. Most kids are only in the hospital for a few days, start back at school within a few weeks, and can typically return to their sports and activities within a few months.
“It’s not a horrible disease or anything like that. They are not alone. I think it can seem like that, it can seem like you’re the only one who has it,” says Garg. “The responsibility is mainly on your family doctor, your pediatrician, to find this. Starting from when they are babies they should be looking at their backs at every regular exam.”
As an adult with scoliosis, I live an active life just like anyone else. Scoliosis doesn’t limit me in any way, even after surgery. Sure, my spine isn’t perfect, I get occasional lower back pain, and my back may not bend like everyone else’s, but my posture has never been better. Scoliosis will always be a part of who I am, but it doesn’t define me.
Christina Cook is the assistant editor of Colorado Parent.