June has become synonymous with Pride Month. But did you know it’s also National Scoliosis Awareness Month?
Scoliosis has been the stuff of jokes in movies and TV, but for those of us dealing with the spinal deformity and its complications, it is no laughing matter.
If you’re unfamiliar with scoliosis, it is a condition characterized by side-to-side curvature of the spine that measures more than 10 degrees. People with scoliosis have a spine that resembles an S or a C rather than a straight line. Often, scoliosis is idiopathic, meaning it has no known cause.
Over the years, I’ve heard it all from practitioners (including orthopedic specialists and chiropractors) at various stages of my condition, from “You have nothing to worry about; it won’t get worse” to “Your situation is dire, and it will only get worse.”
There’s also the myth that scoliosis doesn’t hurt. The truth is that in many people it does. The physical pain is not always in direct proportion to the severity of the curvature — I know several fellow scoliosis warriors with curves far less extreme than mine who have a lot more pain than I do. Still, I do experience pain, and, as much as possible, I avoid situations that require sitting for extended periods. (Sitting is the worst for me…the muscles around the spine become achy as they fight to try to keep my unruly spine in line.)
Besides causing or worsening issues like arthritis, sciatica, and stenosis, scoliosis can compress organs in the body in severe cases. It can affect the heart, lungs, stomach, and intestines — causing cardiovascular, breathing, and digestive problems.
There’s a mental and emotional toll, too. People with scoliosis often struggle with anxiety, depression, and diminished self-confidence. My abnormal spine makes me feel very self-conscious at times. I have an S curve, so appearance-wise everything somewhat balances out and isn’t blatantly evident. However, I’m acutely aware of the deformity, and I dress to disguise it (no form-fitting shirts or tight tankinis for me).
I was diagnosed around the age of 20 during a pre-employment physical exam for a summer job. At the time, it was so mild it required no follow-up — or so I thought. The thing about adult idiopathic scoliosis is it’s largely misunderstood — not just by the public at large but also by those in the medical profession. While a fair amount of resources and interventions exist for children, teens, and very young adults, most adults with scoliosis face an abundance of conflicting information and a shortage of treatment options. With our skeletal development complete, our bodies are generally not as responsive to noninvasive treatments and surgery carries more risks than for younger patients.
For many years, my scoliosis held fast at around 45-degree curves in both the thoracic and lumber sections of my spine — below the threshold at which surgery is typically recommended.
Then came menopause. I was one of those fortunate women who experienced no heat flashes or other common annoying side effects of “the change.” Not so fortunate, however, was the hormonal shifts exacerbated my scoliosis. Not only did curves begin to progress more rapidly, but also my spine began to twist on its axis.
After reading the numerous post-surgery horror stories shared by members of an online adult scoliosis support group, I was adamant about avoiding undergoing the scalpel. Despite my progressing curvature, I had no decreased mobility and only minimal pain (usually only after sitting for too long or if I was on my feet all day), and I could do everything I’ve always done (except I had to change up my weight-training routine, lifting lighter weights and avoiding overhead lifts). I feared surgery might hinder rather than help me maintain my very physically active lifestyle.
I knew I had to do something though.
I tried a supposedly state-of-the-art, custom hard brace—and it was excruciating to wear. It caused exponentially more back pain (including nerve pain) than I had before. I struggled to wear the $4,000+ torture chamber for a half hour at a time let alone the recommended six hours per day.
I also tried the Schroth method, a scoliosis-specific physical therapy approach. While I found it felt good and seemed to help de-rotate my twisting spine, my side-to-side curves continued to progress.
I had nearly lost all hope of stabilizing my spine (let alone experiencing any improvement) without surgery.
Then, I decided to take a chance on an approach that neither the orthopedic specialists I consulted with nor the chiropractic professional who prescribed my brace presented as an option.
In 2022, I reached out to Dr. Clayton Stitzel, a scoliosis researcher and founder of the ScoliSMART program. I admit I did so with a healthy dose of skepticism — his approach is far removed from the conventional scoliosis treatments I was familiar with. But after learning about his methodology and attending a 10-day Scoliosis Boot Camp at the clinic, I was and continue to be a believer.
I arrived at the clinic that July with curves measuring 63 degrees each. When I concluded the Boot Camp, my thoracic curve decreased to 49 degrees and my lumbar curve decreased to 48 degrees. Moreover, I have been able to maintain the correction through his recommended at-home physical therapy regimen and wearing a ScoliSMART Activity Suit, a sort of modular scoliosis-specific orthotic, when working out, walking, hiking, cleaning, and doing other activities. To say I’m thrilled with the outcome is an understatement!
I will never have a normal, beautifully straight spine, but I took a chance, listened to my gut (and the research), and got ahead of the curve — literally.
Will the road ahead be a piece of cake? No. There’s no slacking in scoliosis management. But there is hope!
If you have adult scoliosis, know you are not alone in your struggles and frustrations. I hope my experience helps inspire you to keep a positive mindset and explore your options. We may be bent, but we don’t have to be broken.
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