you can be too flexible: treating scoliosis with a rigo-cheneau brace, schroth, and postural restoration

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.

sophie 9:16 225

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.

brace 1

Luke on the left, helping to lift the 400 degree sheet of plastic up to drape it over the cast of Sophie’s body.brace 2

Here they are closing up the front and turning on the vacuum suction that draws the plastic into the body shape:brace 3

They have to do this part very fast before the stuff cools down.brace 4

Then they cut it off the cast, cut off all the extra, and attach straps.brace 5

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:

sophie's brace 2:11:16 450

And here is Sophie’s spine in the brace.

sophie in brace 11:16

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:

sophie 9:16

sophie 2:11:2016 225

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.

ETA: March 2017.  After eighteen months in it, Sophie, now thirteen, is weaning off the brace.  She is done growing and so her doc has her coming out of the brace gradually, over six months (gradual weaning lessens the chance that the spine will sag back into worse shape).  The main thing: her curves did not get any bigger.  We’re really happy about that!  And now, with her growth done, the chance of progression is much, much lower.  So basically, by holding and not progressing during her growth spurt, she bought herself time and space.  If she is happy in her body looks/pain-wise, there is no need to pursue further treatment.  She looks great, and has no problems—except trampolines.  Apparently trampolines really hurt.  So, she’s done!  Actually, what her doc said: You worked hard and you got yourself through the danger zone.  Now, go, live your life! 🙂

Sophie at 12 yrs old, in her brace, betcha can’t tell, she’s a master of bending fashion to her will (peplum coat, pinstripe vest, combat boots….):sophie in her brace, a stylish

 

26 thoughts on “you can be too flexible: treating scoliosis with a rigo-cheneau brace, schroth, and postural restoration

  1. Tim Ten Eyck

    Hi Maya,

    I’m a long time reader of your blog and enjoy it very much. I read your latest blog about your daughter’s scoliosis. There is an ashtanga yogi out of Norman Ok. who had severe scoliosis at the age of 15. He was facing surgery as well which led him to alternate therapies and yoga. He now is a very advanced yogi. He teaches ashtanga and I believe I read where he practices yoga therapy with people. I don’t personally know him nor do I know if it would help you to contact him but thought I should mention it to you. His name is Bryce Delbridge.

    http://www.ashtangayogastudio.com/users/bryce
    https://www.youtube.com/watch?v=7PaieUOixwc

    If nothing else, enjoy his youtube videos. Wishing you and your daughter all the best.

    Best regards,
    Tim teneyck99@gmail.com

    Reply
  2. Justin

    Thanks for sharing. My girl had it too, she was in gymnastic before that. Hers wasn’t S type. It was about 29 deg, and after wearing the brace diligently everyday, we managed to get it down to around 14 deg. The doctor ask that she only wear the brace to sleep after 2 years. Her next review is in June.
    Be strong, I am sure Sophie can get out of this.

    Reply
    1. maya Post author

      Thanks Justin. Glad your daughter is free of her box, and 14, that’s basically nothing (from where we sit, haha). Best to her and you!

      And thanks, Tim. I’ll look him up. Thanks, too, for reading! 🙂

      Reply
  3. CathyB

    Sophie has always been one of the strongest, clearest-thinking people I have ever known. She has flourished in the unconditional love and support her parents have always given her. I am confident that the protocols she is following will continue to lead to improvement. A note to Sophie: I don’t have scoliosis, but I do have hyper-mobile joints, which makes them slip and slide more than normal ones, leading to injuries and arthritis. I, too, found an excellent PT. I do 45 minutes of exercises almost every day, and I’ve been doing so for many years. It is annoying to be tied to what must be a life-long routine for me. But I cannot argue with the results. It is obvious that you have already figured this out. Go, Sophie!

    And Maya — deep breaths. You are an amazing mom. You are doing everything right. Time and continued treatment will do the rest.

    Reply
    1. maya Post author

      Aww, thanks Cathy. I’ll pass your words on to Sophie. Sorry about your hips! Yes a good PT is a bit of a miracle worker.

      Reply
  4. Rebecca

    Thanks for updating us, your blog fans – how amazing for Sophie to have made so much progress in those months of brace wearing and PT! I can only imagine the heart-out-of-your-body stress and worry; Sophie seems to do whatever she does so well – I have faith you all will figure out the best past through this. Also: this question of risk (calculating various unknowns) and of projecting into an undecided future seems to be more and more part of medicine. Wishing the best for you all! -Rebecca (from MA)

    Reply
  5. Erika

    Hello Maya,
    I feel so identified with your story! My 15 year old daughter was also diagnosed with a severe scoliosis last September. I was so devastated with the news. She is also wearing the Rigo Cheneaux brace that she wears every day sometimes up to 20 hours a day. I have a question for you. Who advise you to get a night brace for Sophie? I was never tell to get another one for night time and I am wondering if this would be necessary.

    Reply
    1. maya Post author

      Hello Erika, Sorry about your daughter’s scoliosis, I hope she is doing all right. Our orthotist, in conjunction with our doc, suggested the night brace. Good luck to you both!!

      Reply
  6. Greta Brink

    Hi Maya!
    This could have been my daughter’s story. Very similar. Luckily we live in Europe and we could get a cheneau brace for our daughter when she was 14, by going to Germany, which is next door to my home country the Netherlands. Insurance was a hassle but luckily European legislation was on our side so they had to reimburse everything. My daughter also does Schroth PT, we even build an entire studio in the attic with all equipment needed to do the exercises. Our daughter is showing reduction of curvature too. A lot of doctors say it is not possible to reduce a curve but sofar we have proven them wrong. My daughter’s posture has improved visibly, and she has pinned the before and after pictures on her memoboard as to keep her motivated to keep wearing her brace (until she is like 18 or 19) and do the daily exercises (for about 20 minutes a day) with of course some days off now and then.. She also went to the Katharina Schroth Klinik in Germany for intensive reha last year, and will repeat the reha for another 4 weeks this summer. My second daughter has scoliosis too, albeit mildly.. But her curve has remained stable with the Schroth PT for the last 2 years. Youngest of 7 shows very slight torsion already but no scoliosis yet.. The feelings you described hit the nail on the head! Thanks so much for sharing Maya and good luck to your family!

    Reply
    1. maya Post author

      Hello Greta, So nice to meet you. That’s great to hear about your daughter’s progress! I hear that bracing and PT is much more mainstream in Europe than here. Here it is nothing, then straight to surgery, for the most part, from what I experienced. I had to search it out. I hope your two youngest are able to avoid all of this. Best of luck to all of you!!!

      Reply
  7. Angela Mitchell

    Hi Maya,
    I’m a long-time reader of your blog (ever since listening to the very fantastic audio version of Conjuring Raine years ago). While I do not have, or know anyone wit,h scoliosis, I can relate to chronic illness. I was diagnosed with multiple sclerosis when I was 25 (I’m 46 now – where the hell does the time go?!). This is part of my shitpile 🙂 I’ve taken daily injections of my medication for the past 15 years. This will hopefully minimize the progression of the disease and the symptoms/relapses. It does seem to be working, as I remain highly functional, thankfully. My husband is the one who “reminds” me to take my shot, which is not fun. The encouragement he gives me makes the difference.
    The attitude and approach that you and Sophie bring to this situation are amazing. Kudos to Sophie for facing this head-on and kudos to you for being her mom, support system, researcher (& much more!). Best wishes to you, her and your family 🙂
    Angela

    Reply
    1. maya Post author

      Hi Angela, that’s so cool that you listened to Raine, thanks for that.:) And thanks for the good wishes for Sophie. So sorry for your MS. It takes such daily courage to face a disease like MS, you’re very strong! I’m glad you have a support team in your husband. Best to you both.

      Reply
  8. Pingback: life in a rigo-cheneau scoliosis brace, or, as we call it, #bracelife – mayaland

  9. Bozena

    Hello Maya, I tried to contact you via email and it was returned. I would loved to ask more questions about your experiences dealing with containing your daughter’s scoliosis. Is there a better way to contact you?
    Bozena

    Reply
        1. maya Post author

          Hi Bozena, after struggling with the backend here at mayaland.com trying to figure out why my email forwarding system seems to have quit, I have just put a new email address on the contact page that ought to work. maya9 @ mindspring .com Give it a go. Sorry for the trouble, and thanks very much for letting me know it wasn’t working. Who knows how long it hasn’t been and how many emails I’ve missed from readers. Sorry readers!

          Reply
  10. Bozena

    Hi Maya, Thank you for the updated email. I resent my email message via Yahoo last night and have not see yet any return email – please let me know if it is not received. Thank you! Bozena

    Reply
  11. KM

    I’m so GLAD you chose this path instead of surgery. I’m an adult version of your Sophie’s scoliosis (same size curves), but I had the surgery in 1971. Schroth effectively didn’t exist then. The bracing didn’t work. After the surgery, I did ok til age 40 when I found out my fusion broke somehow, at some point. My spine was again curving and twisting more and the pain was..B-A-D. Well, I reacted badly to all the metal, had it removed, fusion broke again, had ANOTHER revision, then another hardware removal. I’m fused T2-S1. That was 16 yrs ago and I’ve been in pain ever since. My pile of shit. Additionally the last surgeon (who had trained under my surgeon) punctured the spinal canal, the arachnoid membrane, which resulted in arachnoiditis, which is by itself a very painful condition. He didn’t admit it and it took me several years to figure out the symptoms and the cause so there was no way to sue.
    So yes, you did the right thing!!! ????????

    Reply
  12. Ashley

    Hi Maya,

    Can I ask for an update on Sophie? My daughter has similar curves and we have chosen the brace and schroth path for now. Just wondering if Sophie’s curves have been reversed any further?

    Thanks

    Reply
    1. maya Post author

      Hi Ashley, We go back for further x-rays in Feb. I’ll try to post an update then. Best to you and your daughter!

      Reply
  13. Jen

    Hello,
    Thank you for the great reviews and insight into Luke Stikeleather and his practice. My daughter (4years old) has scoliosis already and we were referred to him today. Luckily it was in the same building, so we just went downstairs and they were wonderful and gave us a tour. We have another appointment to talk further about bracing tomorrow. I had to have a spinal fusion for a 60 degree curve when I was 13 and I want to prevent that for her! She’s got a long road ahead of her. Thanks again for the insight!

    Reply
  14. Melissa

    Thank you for the story. My daughter is 13 and was just diagnosed and has very similar curvatures. We are trying to get into see Luke at the national scoliosis center now. I have also been researching like crazy and was so glad to stumble across your blog. Has your daughter continued to improve? How old was she when she started bracing?

    Reply
    1. maya Post author

      Hello Melissa,
      Sorry to hear about your daughter. 🙁 My girl stayed put, numbers-wise, and is now out of the brace and considered stable. Meaning no further improvement, but no progression, either. She still wears it to sleep sometimes, her choice. She was 11 when she started bracing and 13 coming out. She reached full growth (according to risser score) very young (as did I), so coming out of the brace is linked to that. Good luck! Luke is wonderful, tell him I sent you. Best to your girl!

      Reply

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