Our scoliosis journey started four years ago.  Rowan was just 9 years old when her pediatrician discovered a bump on her back during a routine checkup, and referred us to an orthopedist, Dr. Afshin Aminian, for further evaluation.  We weren’t very worried at the time, as she appeared fine, and we really didn’t know much about scoliosis either.  Our first x-ray with the orthopedist showed Rowan had a 15 degree curve.  He explained that it was normal and didn’t need any further treatment for now, but since she’s so young, she’d have to come back every 6 months for another x-ray to make sure it was not getting worse.

Everything seemed fine over the next several visits to the orthopedist, as each x-ray looked the same as before.  Until one visit when it didn’t.  I still remember the day our doctor came in and showed us Rowan’s spine.  Before he said anything I already knew something was wrong.  It clearly didn’t look the same as before.  At that visit, Rowan’s curve had progressed to 35 degrees in the lumbar spine, with a 22 degree compensatory thoracic curve.  Our doctor assured us that this did not mean she would need surgery, at least not yet.  He gave us a prescription for a scoliosis brace, and probably said a lot of other important stuff too that I can’t recall now because I was in so much shock from Rowan’s crooked spine.

Walking out of the appointment, we called Coastal P&O (formerly P&O Group Orange County) and luckily got an appointment with Stephen for the next day.  After putting the kids to bed that night, my husband and I did our own research on scoliosis bracing and prognosis, just to educate ourselves, and prepare for our appointment with the orthotist.  As her mom, this was when Rowan’s scoliosis became real for me.  So many questions came up; Why did this happen to our daughter?  Out of all my children, why Rowan?  She’s the most sensitive one.  Also, Google can be a scary place when you’re not sure what you’re looking for.  We saw many pictures of scoliosis braces, but to me they looked more like medieval torture devices.  I cried that night at the thought of our precious Rowan wearing one of these until she’s skeletally mature.

At the orthotist’s office the next day, Stephen talked to us in more detail about scoliosis and Rigo Cheneau braces, and showed us some sample braces that didn’t look as scary as the braces online. He also explained how he was optimistic Rowan would be able to avoid surgery and hopefully even have some permanent curve improvement.  After examining Rowan’s spine, he took some measurements and a scan of her torso, which he said would be used to design a unique personalized brace.  He also gave us a tour of his office and lab before we left, explaining how he custom designs and makes all the braces in house to control for quality.

We returned in two weeks to be fitted for the brace.  Up to this point, Rowan had handled her diagnosis very well, but I also felt she hadn’t truly comprehended what wearing a scoliosis brace entailed.  For an 11 year old, it’s one thing to see a brace online or examples of braces in person, but it’s another to see your own brace for the first time.  This was when Rowan’s scoliosis became very real for her. Before fitting the brace for the first time, Stephen told us she should never be in pain when wearing the brace, but also warned us that there may be some discomfort at the beginning.   However, nothing could prepare her for when she first put on the brace.  While it didn’t hurt, it also wasn’t comfortable.  For the first time, Rowan finally grasped that she’d be putting on this device every day for the next several years.  The rest of the appointment was a blur, with Stephen making modifications to the brace to fit Rowan, before finally teaching her how to wear the brace properly.  Thankfully, he also said she wouldn’t have to wear it full time yet, and gave her a break-in schedule to follow for her body to become adjusted to it.

Since we already took Rowan out of school for the appointment, we decided to take her to lunch at the mall, and let her have the rest of the day off from school.  During lunch we talked a bit more about the brace, and encouraged her to share her true feelings.  She talked about how tough today was, and it was only day 1 of her scoliosis journey.  I thought about how to help her, and went back to something I do for all my kids on their first days of school.  Each year before the first day of school, I give each of my kids something small to take with them, like a keychain or other trinket.  Before leaving for school, everyone in the family kisses it.  That way whenever they miss us or each other, or if they’re just having a rough day, they can touch it and remind them of how much their family loves and misses them too.  I told Rowan after lunch we could walk around the mall and find something similar, but since she’s older now, let’s find something nicer.  We stopped by a few stores but nothing seemed to connect with us, until we walked into a jewelry store and spotted a necklace and an arrow pendant.  Instead of thinking of a crooked spine, I immediately thought in my head, “Straight as an arrow!”  Rowan loved it too!  Like we traditionally do, we took it home and everyone kissed it, including her grandparents when we stopped by their house.  It was our way of letting her know she wasn’t in this alone, as we all had her back, literally and figuratively!

The next two weeks went by somewhat smoothly, similar to how Stephen explained it would.  Rowan was wearing the brace more and more, adding hours each day.  The discomfort slowly dissipated as she got more used to the brace.  When we returned to Stephen’s office for her first follow up appointment, he asked about the break in period.  Rowan was now wearing the brace at night too while she slept, along with most of the time she was home from school.  While she had some rough days at the beginning, the discomfort was mostly gone now.  Stephen was happy with her progress, and told us to schedule an appointment with our orthopedist for an in-brace x-ray. 

Before leaving the appointment, Stephen also told us Rowan was now ready to wear the brace full time.  This meant she would be wearing it to school too.  As her mom, once again a million thoughts raced through my mind.  What would she look like wearing a brace under her school clothes?  Would she be uncomfortable sitting in class?  Would other kids tease her?  I thought of everything I could to help prepare her for wearing her brace at school.  We picked out clothes, and bought some new clothes so the brace wouldn’t show.  Her school and teachers were informed of her scoliosis and brace, and accommodations were made for her to have extra time to change for P.E.  We even practiced how she would use the bathroom at school while wearing the brace.

We also asked her if she wanted to tell her friends about the brace, or keep it a secret. Rowan decided to tell her friends, as she really wanted to own it.  The night before her first day wearing the brace to school, she called three of her best friends, friends she’s known since kindergarten.  Unsurprisingly, they were all very supportive, and maybe too supportive at times.  One of her friends said not to worry as she’ll take care of anybody who tries to bully her.  She even said, “I hope someone tries to mess with you so I can punch them in the face.”  While we all appreciated the sentiment, we did let them all know that we don’t condone violence, and how to handle those situations properly.

It turns out wearing the brace at school was pretty uneventful.  Of course she wore her arrow necklace, but really didn’t use it as she didn’t have much discomfort, whether from the brace itself or from other kids.  Her friends were curious about the brace and wanted to see it.  One friend also remarked that while Rowan has always looked like a Barbie doll, she does even more so now with her plastic torso!  After that first day, it was back to normal, as wearing her brace became part of her routine.  I always worried most about how other kids would react, but to this day, she has never been teased or bullied for having scoliosis.  It helps me appreciate how blessed she is to have the school she’s in, and the group of friends she has now.

In-brace x-ray
Initial x-ray

Our next big event was the in-brace x-ray.  Stephen met us at the orthopedist’s office for this appointment.  This was so Stephen, Dr. Aminian, Rowan and I could all together discuss the results of the x-ray, and our next steps moving forward.  We love this team approach and helps Rowan realize they’re making this extra effort all for her benefit.  Before the x-ray, Stephen said he expected to see improvement in the scoliosis curve.  Boy was he correct!  The in-brace x-ray looked way different from the one we took 2 months earlier.  While the doctors measured her curve at 5 degrees in-brace, “straight as an arrow” was all I could think about.  The orthopedist was happy with the x-ray results and gave Rowan a small pep talk about wearing the brace full time.  He told us to come back in 6 months for an out-of-brace x-ray to show how the spine was responding, and gave her a brace holiday the night before that appointment where she wouldn’t have to wear the brace for 24 hours.  Stephen was also happy with the x-ray results and was hopeful that Rowan has a good chance of seeing some curve improvement along with avoiding surgery if she keeps wearing the brace.  He told us of a colleague and friend on the East Coast who also specializes in Rigo Cheneau braces, and his studies showed 30% of patients ended up with curve improvement, and felt Rowan had a high probability of being in that category.  He also told us to come back to see him in 6 months, or earlier if any issues come up.  Stephen explained issues weren’t uncommon as Rowan is still growing, while the brace remains the same size.  Overall this was a great day for us, and so encouraging to see a picture of a straight spine, even if it was while wearing a brace.

Over the next year, Rowan continued wearing the brace full time, with almost no issues.  Everything was going well, probably better than expected.  Periodic checkups with our orthopedist showed the curve was responding well to the brace.  Around a year after starting brace treatment, we returned to Stephen’s office as Rowan had complained of some discomfort while wearing the brace.  Stephen had already adjusted it a few times before for growth, but this time the brace looked tight and too short.  He measured Rowan and it turns out she had grown 7.5 cm over the past year.  Since he can’t make the brace taller, Rowan needed a new brace now.  His evaluation also showed her back may have improved as her rotation was less than before.  Her next scheduled orthopedist appointment for an out-of-brace x-ray was in a couple of weeks, so he took new measurements and a scan, but waited until after that appointment so the new brace would be made based on her latest x-ray.

New in-brace

This time the x-ray showed significant improvement from before.  Her lumbar curve reduced to 16 degrees!  Stephen was thrilled with the results, as he made her a new brace.  We returned in a week to be fitted with the brace, which was much easier than before as she was now used to wearing a brace.  With no adjustment period needed this time, the in-brace x-ray a month later showed both curves at 1 degree!  Again I thought, “Straight as an arrow!”  When we started this process, never in a million years did we expect to have essentially no curvature, whether in-brace or not?  Stephen did caution us that while the results are great, especially after 1 year of bracing, we’re not out of the woods yet as Rowan is still premenarch and risser 0, meaning she still has significant growth remaining.  Nonetheless, Stephen, Dr. Aminian, and I all left the appointment as happy as could be!

Throughout this scoliosis journey, I’ve gotten to meet other parents with daughters having scoliosis.  Sharing stories and encouraging others has been therapeutic.  I’ve also been asked about Rowan’s results, and things Rowan and I have done to manage our situation, which I’m more than happy to share.  For Rowan, she always felt her best advice is to accept the situation and own it.  She believes telling her friends about her scoliosis and brace, instead of trying to hide it, has been a huge part of her success.  My biggest advice, especially to other parents with kids about to start a bracing program, is that scoliosis bracing does work, but it’s not going to be easy, and most importantly we need to be strong for our children.  To do this, you’ll need a good team first.  Find a good orthopedic surgeon who is educated in Cheneau principled braces and advocates for conservative treatment first.  Also, find a good orthotist who is specifically trained and specializes in Rigo Cheneau braces.  Depending on where you live, those may be few and far between.  Don’t be afraid to shop around and ask pointed questions when meeting your orthotist, to find out more about their Rigo Cheneau training and examples of successful patient encounters, and to make sure you and your child feel comfortable with your orthotist.

When starting brace treatment, the first few weeks are going to be tough.  As hard as it is, we have to be the strong ones, to push and encourage them when they don’t necessarily want to.  I can remember once at the beginning when Rowan was already having a bad day, and while the brace wasn’t hurting, it was still new and uncomfortable and she really wanted a day off because of her other problems.  I didn’t give her a break that day as I knew it would set her back, or even worse, send a message that it was ok to quit in tough times.  That was tough on me too, and I cried when Rowan wasn’t around knowing how uncomfortable she must’ve been.  But I needed to be strong for her, and in the end, she fought through it and came out stronger too.  I’m still constantly amazed by how strong she is, both mentally and physically, as I don’t believe I wouldn’t have handled this as well as she has.  Our kids are strong and resilient, but sometimes we need to push them to realize it.

Rowan’s latest x-ray, while holding her arrow necklace in her mouth!

Fast forward to last month.  It’s been almost 2 years since we started our scoliosis brace journey.  Rowan is now entering junior high school, and just a few months shy of becoming a teenager.   She recently had another out-of-brace x-ray, where after 24 hours without wearing the brace, her x-ray showed she now has a 12 degree lumbar curve.  Dr. Aminian was more than thrilled with the results.  According to the University of Iowa risser model, Rowan started off with a high risk for surgery (96% chance of poor prognosis without intervention), and now is at low risk (2% chance).  We couldn’t be happier!  It might not be exactly “straight as an arrow,” but 12 degrees is pretty darn close!