Last fall, my daughter was bestowed a diagnosis of scoliosis.
I’m not talking about a little bit, the kind where you ignore it and go on with your life, only a bit more crooked. I’m talking about the kind where the doctors look you in the eye and say your kid needs spinal surgery.
I was gobsmacked. There had been no sign, she didn’t look crooked, no way, how could this be? I went into hyper-research mode (beware a mother with an internet connection) and read studies, forum discussions, doctor reviews, journals from international organizations, even made myself rather sick looking at x-rays of severely distorted spines. Basically, if you have a curve with a Cobb angle of less than 20 degrees most American medicals will say “wait and see.” Over 20 degrees, they say, “let’s look at bracing” to keep the curve(s) from progressing until the kid’s growth period is over (and then, maybe that’s it, or maybe it’s surgery anyway). But if you’ve got a Cobb angle over 50 degrees go straight to surgery, do not pass go. Doctoring by numbers.
Sophie’s thoracic curve was 55.
The reason we hadn’t seen it before was that she has an S shaped curve with the bottom curve being about the same size as the top, creating a symmetry that means she looks straight. If she bends over, you see a bit of a swell on the upper right and the lower left, but it’s pretty minor. She looks like a gorgeous, athletic kid. Until you look at the x-ray.
This is from September. I fell out of my chair when I saw it.
Long time readers will remember all those pictures of young Sophie popping into advanced yoga poses (to my great jealousy) kapotasana on a whim, dropbacks like eating candy, my super-bendy girl. Turns out there is a very high correlation between super-bendy girls and scoliosis. Not CAUSE, correlation. Gymnasts, ballet dancers, etc, are statistically more likely to get it. Whatever makes them so able to do the extreme moves that make them great at their sports/activities, that thing also carries a risk of bones and/or connective tissue that aren’t holding up under gravity. Turns out, being bendy isn’t always a plus.
Right away, given Sophie’s remaining growth (an educated guess about it, anyway), there was the suggestion from the docs of getting her into a very new, high-tech surgery involving tethering the vertebra with a wire (like getting braces on your teeth except it’s your spine being wired up) where the tethering would cause her spine to literally grow the curves straight. It’s so new, however, that long term outcomes are unknown. Avoiding surgery, if at all possible, seemed like the way to go to me because side-effects and complications are real and come with that roll of the dice all too frequently. More importantly, Sophie didn’t want it.
However, because that kind of surgery is growth dependent—unlike the much more invasive, tried-and-true surgery where they install titanium rods along the spine—there was a limited window of opportunity. The surgeons gave us six months tops, to decide. Pressure.
But we decided to take the risk, and with that uncertainty and time pressure hanging over us, we put together a team of an orthopedic surgeon who is a specialist in scoliosis, an orthotist (for a brace), and a highly specialized physical therapist. The brace we went with was the Rigo-Cheneau brace, custom made by Luke Stikeleather (one of the only people making them in this country), and a combination of Schroth and Postural Restoration physical therapy.
Did I mention that all these appointments were out of state?? Except the PT, thank god she is just one city over. What an exhausting fall we had.
Anyway. Cheneau braces are custom designed to work with a specific person’s spine and curves. Luke built Sophie her brace with a rather fascinating process of 3-D printing her body, making the therapeutic adjustments to the cast shape, then draping hot thermoplastic over the cast.
Luke on the left, helping to lift the 400 degree sheet of plastic up to drape it over the cast of Sophie’s body.
Here they are closing up the front and turning on the vacuum suction that draws the plastic into the body shape:
They have to do this part very fast before the stuff cools down.
Then they cut it off the cast, cut off all the extra, and attach straps.
Finally a long fitting process begins where he cuts and trims and files and reheats parts with a blow torch to relieve pressure points. Internal straps and pads are added to increase the correction on the areas that need more pressure (the convex places in the spinal curves), with spaces left in the concavities that breathing can fill. Then the kid goes back to the hotel to sleep in the thing for a night to find revealed problems, sore spots, areas that rub, etc, and more fitting the next day. Luke really, really wants to get it right. He is fantastic, generous, kind, and extremely dedicated.
The result is a bit like a steampunk corset, or maybe body armor, although it is asymmetrical, high under one arm and lower on one hip. Here is Sophie’s brace:
And here is Sophie’s spine in the brace.
Better. Still very crooked, but better.
We ended up also having Luke make her a sleep brace, because lying down is a totally different gravity picture from upright, and more specific and aggressive correction could be done in either position, if he wasn’t trying to cover all the bases with one brace. Her curves were advanced enough that it seemed prudent to go for as much whammy as we could get out of “bracing” as a therapeutic choice. So a long, agressive brace for lying down and a cut-down, shortened brace for sitting (where too much length would keep her from being able to comfortably bend her legs, or lower her arms) for day.
Success with bracing depends on wearing the thing as much as possible, and studies indicate the best success when it is worn over 21 hours a day. That’s a lot. “I live in a plastic box,” Sophie says.
To balance all that non-movement, and to come at the problem from a different direction, we added physical therapy. Schroth PT offers a lot of lengthening, stretching out the curves, and breathing into the compressed areas. Relief. Postural Restoration offers exercises chosen for Sophie’s specific curve patterns to strengthen the muscles (again, asymmetrically) so they can support the spine in a better position. The stronger the muscles get, the easier it becomes to hold a good position during daily life—that is, the muscles start to do internally what the brace does externally. Hard work, but doable. Combined, Sophie does about 30 minutes of exercises a day.
Scoliosis is such a weird thing to deal with because it looms so large (especially the extreme cases) as this potentially terrible thing, deformity, compression of organs, pain etc…but my kid was right in front of me with no symptoms, a gorgeous, strong body, no illness. So all the worry—and I had tons, keeping me awake at night—is for something that hasn’t happened yet. And that worry takes up your personal bandwidth, you know? I couldn’t write, I quit yoga for a while, quit blogging (y’all might have noticed), quit everything but dealing with this for a while.
I mean, if your kid gets, say, cancer (and I am so grateful that the Medical Problem Card we drew was not cancer!!), your kid is legit sick right now, it’s terrifying, it’s a crisis right now. Scoliosis, on the other hand (at the level we are dealing with), is a borrowed problem from the future. It’s a scramble to play the probabilities in treatment paths that may or may not lead to a good result with the fewest side-effects. It’s seeing a storm on the horizon, not knowing how bad its going to be when it gets to you, and trying to decide whether keeping an eye on it, getting in the cellar, or driving away is the best choice with the least disruption. You get informed, you make your choice, but no guarantees. But whatever choice might lead to a bad outcome.
But hey, Sophie is not currently sick, and that’s GREAT, that’s my kid not suffering, not ill, hallelujah, and I hold onto this gratitude with both hands. She’s fine, she’s safe, seriously, right now she is fine—thoughts like this would help me sleep, especially in those first few weeks when I didn’t know what to do, and was researching till it felt like my eyes were bleeding. Being a parent is having your heart walk around outside your own body, isn’t it?
Back to the story. As all this was happening, I was very open with Sophie about everything I was learning and about what doctors said about her situation, without being alarmist or freaking her out any more than I could. I told her what I learned, what I thought, and gave her room to make her own conclusions. After all, this is her body, her life we’re talking about. I wasn’t about to make a decision about it without her being fully, 100% on-board, that is, without it being her decision, too.
As a result, when we decided no surgery (for now), she was committed to the brace/PT path because it was How She Would Avoid Getting Cut Open. Her doctor was, as he put it, “all in” with a trial period of The Plan, and frequent reevaluations. Every day (pretty much) she did her exercises. Every day she wore her brace, tracking how many hours out of it for different activities (aikido, running, bathing, fun, etc). About her exercises, she might say, “I don’t want to, you have to make me do it.” And I would say, “do you want me to be a drill sergeant? Or maybe offer you chocolate rewards? Or use logic?” And she would frown and say, “Chocolate.” Or, “You pick.” Or, “I hate everything. Poop.” Other days she went off on her own. “You need to do your exercises.” “I already did them.” “Most excellent. Have a cookie.” But my basic message on her hardest days is always, “If you think it’s worth doing, you have to do it for it to work. If you don’t think it’s worth doing, then we need to figure out another treatment plan.” Just the simple fact of the situation and that I will listen to her if she doesn’t think it’s working. (“I know, I know, I’m going….” she says.)
But those days have been rare. She is on it. And anyway, occasionally, fuck it, she gets a day off. Because she works really hard at this, and she’s a kid.
It’s been a little weird how constantly the medical people we have encountered have talked about how hard it is to “get kids to comply.” Comply, comply, such a yucky word, who wants to comply? It’s like giving up your will, it’s submission, I can’t believe they use that word. But when an x-ray tech, or a doctor, mentions how unusual it is to have a kid “comply” Sophie and I just look at each other in confusion. In Sophie’s mind, the best medical care we can find says that this is what she needs to do to get well. It’s in her highest interest to do it. So why wouldn’t she? Compliance has been a non-issue with her.
At Luke’s brace clinic, a gal comes in and does a kind of counseling/information/orientation session where she talks about how much to wear it, how to clean it, yada yada, with an obvious slant towards convincing the kid not to take it off, not to “cheat.”
“Why would I do that?” said Sophie. “I want it to work.”
“Well, for example, some girls are worried about how it looks and what their friends will think. Are you worried about that?”
“No. My friends aren’t jerks.”
End of counseling session.
Back at home, gradually, we fell into a routine. Stress lowered to a bubbling simmer. We had the incredible luck of finding a Schroth/Postural Restoration specialist, Susan Henning, who has been fabulous. At first I had her teach me as much as she was teaching Sophie, because then I could be the Susan-in-absentia as best I could between appointments. Later, Sophie got it down and didn’t need me as much.
She has gotten so strong, it’s crazy.
Of course, always the fear that we made the wrong choice. That this whole plan wouldn’t work, that the PT, the brace, none of it would be enough.
And the expenses. Jesus Christ, don’t get me started. ZERO of this very expensive medical care was paid for by our crappy insurance. Zero. High deductibles, out-of-network providers (as if some other PT would be interchangeable with Susan’s in-depth, specific training! as if any-old brace would be as effective as the one Luke built her!). I curse Blue Cross Blue Shield now when we drive by their building. Sophie’s brace is now the most expensive thing we own, second only to our house (we kind of have crappy cars, but still). This is crazy! /endrant. Thank goodness for generous grandparents or I don’t know what we would have done. Thank you grandparents!!!
Fast forward five months.
September to February, passing in a blur of stress and travel, then boom, it was time to head out-of-state once more for our fancy schmancy scoliosis expert doctor appointment and a new x-ray—this one taken with Sophie out-of-brace for 48 hours—and this is what we found:
Look at the bottom curve! From 45 degrees down to 29!! And the top is down, too, if only 5 degrees, still, it’s 50, not 56, that is, NOT GETTING WORSE. The doctor, this mild-mannered, intensely smart man, came in with a bit of wonder and said in near deadpan, “Well, your progress is spectacular.”
Here’s the thing: remember I said she looks straight? She looks great. And scoliosis is a cosmetic issue up to the point of organ pressure and we’re not there. Sooo…if she holds, even as crooked as she is, she’s golden. Holding was the minimum effective result we were looking for. The curve not progressing. Holding.
This was so much better than that!
We were jumping up and down and hugging. Surgery is off the table for the foreseeable future (although it remains a possibility years from now depending on how things go). Sophie did it! She even grew two inches—some of which was coming out of the curve, some of it regular growth, but that was growth UP not sideways. More indication that the curve is not progressing.
So. Much. Relief.
We chose a path, and so far it’s working. We’ll keep doing what we’re doing (what she’s doing, mostly, I’m just the driver, cheerleader, and bill-payer at this point), and we’re to check back in in six months.
Of course, of course, these are still some big curves. It’s a brace and daily exercises for Sophie for probably years. It’s the much-better-than-the-alternative but still the not-very-great option. In fact, it’s kind of the sucks-a-lot option. But it’s the best she’s got at the moment. There’s a long way to go.
Everyone gets a pile of shit they have to carry in their lifetime. This is part of Sophie’s pile. I wish I could carry it for her, I do everything I can, but ultimately, she’s the one in that body. This is her life. But she’s been taking this head on. She’s amazingly strong inside, as well as out.
She impresses the hell out of me.
I wanted to write this post because when I was in full-on research mode I so appreciated any family-accounts that I could find. Reading the studies, full of statistics and faceless girls (it’s mostly girls) is one thing (and important). Hearing real people’s stories is another, and so needed. Especially good stories. I’ll update this post as Sophie’s story progresses. I fervently hope it continues to be good news.
ETA: For a Sophie/Maya co-post about life in the brace, see this post.
Sophie in her brace, betcha can’t tell, she’s a master of bending fashion to her will (peplum coat, pinstripe vest, combat boots….):