I would like to tell you about two housecleaning tasks I did, because in my opinion they are among the grossest and most thankless: I removed the toilet lids/seat unit (we have one like this that’s designed to be easy to remove) and scrubbed it in the tub, getting all the hinge areas that get so gross especially if you live with a lot of people who pee standing up; and I cleaned the small plastic trash can we use to hold the toilet brush and toilet plunger. Then I washed my hands up to my elbows, then I did it again, then I did it a third time, and then I went and lay down for awhile with a fan blowing on me soothingly. But it is so satisfying to have those two areas cleaned, and to think of not having to do it again for awhile.
We have had a new diagnosis in the family for me to fret about. At Elizabeth’s 13-year annual check-up, the pediatrician noticed her spine wasn’t straight, and sent her for x-rays. The pediatrician said sometimes nothing needs to be done other than keeping an eye on it.
But the x-rays came back showing a 30-degree curve, and the pediatrician said she should see a specialist. We had to wait weeks to see the specialist, and then it was for a 5-minute appointment: he shook our hands, tested her reflexes, showed us the x-rays, and said he’s referring her to the spine center of the big-city children’s hospital. He says she will almost certainly need a brace.
Did you read Deenie as a child? I read Deenie. I don’t remember a whole lot about it; it’s lumped together in my mind with a whole bunch of books about teen and pre-teen girls with various issues (The Cat Ate My Gymsuit, Are You There, God? It’s Me, Margaret, The Pistachio Prescription, There’s a Bat in Bunk Five, It’s Not the End of the World, Forever). But I do remember the part about The Brace. That book is probably my only encounter with scoliosis, and it did not leave a good impression of it.
Well. Presumably there have been some advancements since 1973. I am hoping that, as a group, we know something about this and can collect in the comments section the various things we know and have heard, either from our own kids’ experiences, or the experiences of other kids we know or are related to.
So far I have learned that my brother had mild adolescent scoliosis, which I hadn’t remembered at all. My mom remembers it was a 7-degree curve, and nothing had to be done about it; the doctor just kept an eye on it to make sure it didn’t get worse. It hasn’t been an issue.
I have also learned that a 30-degree curve is not great but not the worst; it’s “moderate” as opposed to “mild” or “severe.” I have learned that there are “S-curves” and “C-curves”; Elizabeth’s is an S-curve, so it curves one way and then back the other way. I have learned that the main concern is not the current curve, but rather that Elizabeth is in a rapid growth stage, and that the curve could worsen rapidly during this stage (already it went from nothing at her 12-year check-up to 30 degrees a year later). I’ve lightly learned (that is, I am not sure of this knowledge and don’t yet know how/if it will apply to Elizabeth’s particular situation) that the primary goal of bracing is to prevent FURTHER curving, but that bracing can also in some cases decrease the current curve; I have not learned if this is something they maybe only attempt in more severe situations. (Elizabeth is not having any pain or other ill effects from her current curve.) I’ve turned my eyes away from some of the possible lifetime effects of scoliosis.
I have learned that in the term “adolescent idiopathic scoliosis,” the word “adolescent” refers to when the scoliosis first presented itself, and “idiopathic” means there is no known family history of it and it just came out of nowhere (which is not uncommon for scoliosis) (but my brother DID have mild scoliosis, so I wonder if they’ll change that word after taking a family history). And I’ve learned that scoliosis is more common in children assigned female at birth than in children assigned male, and also tends to be more severe in children assigned female than in children assigned male. They don’t seem to know why, though I haven’t exactly gone rummaging through the scientific journals to see what the current thinking is.
That’s pretty much it. Right now we’re waiting for the children’s hospital to call us to set up her appointment. Adding to my stress is that it’s a DIFFERENT big-city children’s hospital than the one Edward goes to for his Crohn’s disease treatments. It would be so nice if she were going to that same familiar hospital. I’d been planning to call and get the referral changed—but then I did some online searching about how to compare hospitals and which were the best hospitals and so forth, and basically the one Elizabeth has been referred to is one of the highest-ranked children’s hospitals anywhere, and the one Edward goes to is not on the lists.
So. I guess I will think of this as an Opportunity to get familiar with another hospital. I will look on the bright side: it’s a little further away from the city center, so maybe the driving and parking WON’T make me cry! Also: the hospital Edward goes to has TERRIBLE food. Like, remarkably terrible. Like, they must be doing it on purpose. Maybe the new hospital will have better food.
I don’t have any personal experience with scoliosis, but I do remember the book you’re talking about. I feel confident that there have been a great many advances since 1973. Good luck in getting her treatment.
Also, I feel exactly the same way you do about going to new places, so you have my sympathy anxiety. Maybe if we all feel anxious enough it will spread out and not be so bad for you? We can hope.
I don’t know anything about scoliosis but I’m glad Elizabeth is going to a highly ranked hospital.
I wonder if it is at all possible to get Edward’s care transferred there? Then you could deal with only one hospital (and maybe better food) too. Maybe even get their appointments on the same day sometimes.
Long-time lurker here. I am in my fifties, and nothing was ever done about my scoliosis. Many people have it much worse than I do, but it has definitely caused problems for me. I would encourage you to imagine your daughter in approximately 30 years, when she’ll be so grateful that this is no longer a problem for her!
I have no experience or advice in this, only sympathy and virtual hugs and assurance that you are strong enough to handle whatever needs to be handled. If you can scrub a boy bathroom, you can stare down scoliosis. Blessings from here.
Deenie is also my only scoliosis reference and my memories are scarce like yours. I’m going to go upstairs and get my daughters copy to re-read as soon as she wakes up today. Remember the movie Sixteen Candles and the one girl had on a brace? I think I maybe saw a handful of people wearing a similar brace as a kid but I haven’t seen anyone wearing a brace like that in years. That tells me things have changed greatly since my Deenie reading days. I’ll be thinking of you both.
I was Elizabeth’s age in 1994 and diagnosed with the same type/degree of scoliosis — S-curve, 30 percent one way, etc. The orthopedic initially suggested a brace, but instead I ended up doing chiropractic therapy all through my teen years. Weekly appointments until I stopped growing. It was effective for me. My curve never got worse. As an adult, I’m mostly unbothered by it, though shorts and skirts always sit crooked on me and I occasionally get headaches that stem from my neck. Good luck.
We have a good family friend in my oldest’s class with scoliosis and braces are nearly invisible these days. They are so thin. But it is uncomfortable to wear and I know there’s a lot of negotiation about when and where and how long family friend will wear it day to day.
I had scoliosis as a child (I’m now 39) if you would like to ask me questions. I wore the brace for two years until I had my menstrual then it was determined that I needed surgery. I elected to only tell a few friends about the brace and swore them to secrecy. No one knew about the brace or surgery outside of my friend group.
I will forewarn you that the brace sucked. 23 hours a day and I could only take it off to shower (maybe that has changed?)
I have no personal experience with scoliosis but I am sending good soothing thoughts to you and Elizabeth. I am also tickled that we read the same books (perhaps they were simply Required Reading for young women born in a certain time).
We just had my 5 year old’s yearly appt and the dr noticed a curve in her spine and mentioned that we need to “keep and eye on it”…like any mother, I’ve made myself crazy in the months since reading everything I can about scoliosis. 5 seems so young! The dr almost sent us immediately for an X-ray, but at the last second decided to wait a year.
My 11 year old also has a small curve that we need to “keep an eye on”…so I have two daughters in limbo. I guess I’ll learn more at this year’s physicals.
In my obsessive googling, I’ve learned that braces are a whole new game since Deenie…so at least there’s that. Also, surgery is only recommended for the most severe cases. Keep us posted! Please! You’re the best blogger when it comes to real life updates!
When I was a camp counselor (ahem, 20 or so years ago) one of my campers wore a brace for scoliosis. I’m sure it made a difference to her, but I remember it not being a big deal. All I remember about it now is that you could see the brace, but there were no significant activity restrictions and she did not seem to be argumentative about wearing it. I remember worrying, for a brief moment, that it would mean we had to make big changes in how we operated for those two weeks and then it turned out I don’t think we changed anything.
Oooh, I know something about this! I was diagnosed with scoliosis as a child. My mom noticed because my pants would be shorter on one leg than the other. My leg itself wasn’t shorter but my spine was curved in such a way that it twisted my hips and had a similar effect on the pants. I wore a back brace for several years, maybe fourth through eighth grade? I had to wear a t-shirt underneath (think plain white men’s t-shirts that come in a pack) to help with sweating and chafing and presumably to keep the brace clean. The straps on mine were in the back, so I needed some help getting them tight enough. I was allowed to take it off for gym class but my mom (who often volunteered at the school) or the teacher would tighten the straps for me afterwards. The whole thing was a bit of a pain, but nothing unbearable. It would probably be more of a hassle for a highly athletic kid but, yeah, that’s never been me. Eventually I transitioned to wearing it only at night and then not at all. It’s such a distant memory now and doesn’t impact my life at all (I’m 34) that I often forget to mention it in the medical history portion of forms at doctor’s office. The last time I got a new primary care doctor, I did mention it and asked her to look at my spine, and she did. She said everything looks fine, and that basically you wear the brace during adolescence until your spine stops growing and then you’re set. I remember being really afraid of needing a rod down my spine (which I think was pretty uncommon in the early 1990s when I was diagnosed and even less common now) but no one even suggested it. The rod/spine thing supposedly means you’re not allowed to dive or ride horses (and I do know someone who had it done and it meant she couldn’t get an epidural during pregnancy) but that’s about it on that front too.
It sounds like you have a good care team and I’m sure you and Elizabeth can handle this!
I read Deenie too!
About the scoliosis– if she needs a brace it is possible that she’ll only have to sleep in it. My friend’s daughter does that. The main complaint is that during a period of rapid growth they’ll outgrow the brace and have to have a new one made. Also, you have to be sure that the pajamas and brace allow the wearer to use the bathroom independently ( her daughter is 7 and can’t unfasten it by herself). However, like casts, braces are available in different colours and patterns now. The current one is cats in space.
Hoping for the best and waiting for an update. :)
My teen son has mild scoliosis — it’s been monitored, but he hasn’t needed a brace. I was initially afraid it’d affect his ability to do the things he loves, but he’s a second degree black belt, plays the viola, and hasn’t had to worry about it.
One of his best friends, also a teen boy, has also been diagnosed with scoliosis (also also also…!), but he *does* wear a brace. His life seems to be mostly unaffected: he does mixed martial arts, is a black belt, and plays the trumpet in marching band. His close friends all know about the brace and it is NBD. When my son’s had sleepovers, this particular friend brings over a special air mattress for his brace/back, but otherwise requires no special accommodations.
My aunt had severe scoliosis growing up (in the 1960s). I don’t know about the current brace situations, but I know that she wore a brace for many years and needed surgery. The reason I am writing is like the above poster, to assure you that my aunt is a very active (mountain climbing, ice skating, trail hiking) 68 year old woman, who has never been held back by her twisty spine. I am SURE that medicine has advanced since then, and I feel confident that Elizabeth will have at least as good if not more successful treatment and turn into a kick ass older person.
As soon as I saw the title, I thought “DEENIE!” I read that book many times and I have re-read it as an adult. I do know three girls who have scoliosis – two were deemed mild enough to not require intervention, and one required surgery. The surgery was six months to full recovery. I think they put a rod in her spine. It was difficult because she was/ is a competitive swimmer.
I do think that technology has changed a lot since the Milwaukee Brace, which as I recall was bulky and had a big collar for the neck. I think braces now are a lot thinner and while probably not super comfortable, would be at least less noticeable.
But oh! Swistle! I am so sorry that you have to go through this. I hope that you become quickly familiar with the new hospital, and that parking is easy and smooth, and that the cafeteria offers at least halfway decent food.
Oh I know about this! I was diagnosed with scoliosis about the same age in the early 90s. I was also S curve but do not remember the percentage. There was talk around a brace, but before that my doctors wanted to attempt some behavior changes—it turned out I carried a super heavy backpack on one shoulder every day for a long time. So I had to practice sitting straight and carrying my backpack on two shoulders evenly and a few other things I can’t recall. And basically I think keeping my body even and straight helped and then I just sort of grew out of it? All of a sudden (it seeemed to me, my mother might tell a different story) I just no longer needed to think about a brace. But I did have to wear my backpack on two shoulders for ever. I’ll check with my mom for her perspective.
As soon as I saw the title, I thought “DEENIE!” I read that book many times and I have re-read it as an adult. I do know three girls who have scoliosis – two were deemed mild enough to not require intervention, and one required surgery. The surgery was six months to full recovery. I think they put a rod in her spine. It was difficult because she was/ is a competitive swimmer.
I do think that technology has changed a lot since the Milwaukee Brace, which as I recall was bulky and had a big collar for the neck. I think braces now are a lot thinner and while probably not super comfortable, would be at least less noticeable.
But oh! Swistle! I am so sorry that you have to go through this. I hope that you become quickly familiar with the new hospital, and that parking is easy and smooth, and that the cafeteria offers at least halfway decent food.
My cousin had very severe scoliosis and ended up needing surgery. I live far from her so I wasn’t there for all of this, but from family accounts, surgery year was a rough year, but now she is recovered and her normal self. She was very concerned about the scar for a while (she was 16 at the time) but she took care of it and it doesn’t bother her much now.
My brother had mild scoliosis and the doctors said not to worry about it, but then he started gymnastics at 15 and over the course of the next 6 years of repetitive landings on one hand/arm/shoulder, injured his back severely. He was told to never do gymnastics, running, or weight lifting ever again, but thankfully after some physical therapy he is able to do some athletic stuff again.
I remember Deenie! I had a friend in middle school (early 80s) who wore a brace for scoliosis and you could never tell; I only knew because she told me.
I hope it will ease your stress to remember that you figured out how to navigate Edward’s disease and hospital and trips to the city, and that experience will make it easier to figure out all this new stuff. Good luck–
Here’s a surprise: I have/had (?) really mild scoliosis. I think I was on the *maybe* side when they checked in my teens then it went nowhere for whatever reason. The chiropractor asked me if I knew I had it and I had to say no. So, I agree, make a chiropractor appointment in addition to the other doctor and see what they have to say. If you don’t like the chiropractor, try another one until you find a good fit. I know, I know, I know: I’m saying to do all the things you hate. I’m sorry.
My childhood BFF had a brace and she hated it but it was the late 70’s so FOR SURE technology has improved. I don’t think anyone knew unless she told them.
I like the idea of seeing if you can switch Crohn’s doctors! Maybe that will be a shiny side.
My daughter had mild scoliosis a few years ago. I found out when I put my hands on her shoulders to talk to her and noticed that one hand was much lower than the other. We did the specialist visit w the x-rays. I don’t remember what her degree of curve was, but it was an S curve and they wanted to wait six months and x-ray it again to see if it got worse. She had some sort of growth spurt and when we did the second x-ray, it had straightened out enough that they weren’t worried about it at all. So I guess we are done? She is 17 now and slouches constantly, but I don’t think it’s a medical slouch. :)
My neighbor’s daughter is headed to ninth grade. I recently found out she has been wearing a brace for the past year for scoliosis. I had no idea, and I see her all the time. So — its hardly noticeable these days, but it is apparently annoying to wear. She plays lots of sports and I don’t think it affected whether she could play or not.
My neighbor’s daughter is headed to ninth grade. I just found out that she has been wearing a brace for scoliosis for the past year. I had no idea, and I see her all the time. So — it is not noticeable these days, but it was apparently annoying to wear. But she still played all her sports!
My 10-yo daughter just got diagnosed with a 30-degree S curve and will be using a Providence brace at night only for the next 4-5 years. Her specialist said 85% of braced kids with that curve will see and improvement or stability and that surgery would be indicated if the curve got to 50. Happy to pass on any other info I have!
I’m so glad to hear braces have changed. I have the same diagnosis as Elizabeth and had to wear a back brace back in the late 80’s for my middle school years and first year of high school. It was traumatic and awful. My curve was high between my shoulders and they wanted to give me a brace that had the halo neck attachment like Joan Cusack had in Sixteen Candles. I lost it in the doctor’s office and they said they’d go with the “regular” kind without the halo. It was still terrible and I had to wear it at all times except to shower. From a physical standpoint I’m fine. I’ve had it checked out regularly and it’s still the same degree of curvature, but doctors say it shouldn’t necessarily get any worse as I get older. You can see the bump on one side of my back when I bend over and my ribcage is wonky, but no one else ever notices it, even when I’m in workout gear and tanktops. It’s just me who’s aware of it. It isn’t painful and it doesn’t affect my movement.
My oldest daughter- she’s 15- has mild scoliosis. I have no idea what the degree is or anything, but one of her hips is about 1/2 inch higher than the other. She’s supposed to wear a lift on one foot and won’t. It’s a mild annoyance during soccer season when she starts to complain about back pain and wants to go to the chiropractor to be stretched twice a week. Oh, and we bought her a backpack on wheels from LL Bean so she didn’t have to have all that weight on her back.
Here is a Heartening Anecdote about life with a scoliosis brace. My friend Megan had scoliosis, and had a brace. She was cool about it- it gave her “abs of steel,” that is, if you bumped into her, her midsection was surprisingly hard- she was open about it at school. Once I slept over at her house, and she couldn’t find her brace (she didn’t have to wear it all the time). She hollered to her mom to find out where it was, and lo, her mom had hidden it in a black plastic garbage bag (?!) on the assumption that Megan would be embarrassed if I saw it. Which she wasn’t, so I guess what I am saying is that Elizabeth with certainly have feelings about what is happening but don’t make assumptions about what they will be.
A friend of mine’s daughter just finished with this laser year. She’ll have to have a brace and hopefully, she won’t be as big of a pill about it as Deena was. Just keep telling yourself and Elizabeth that this is TEMPORARY and if she wears it and follows doctor’s orders, it will help if not outright fix the problem with her spine. It fixed Deena’s and she no longer has to wear one. And, well, it was an everyday battle to get Deena to wear it because she hated it and how it looked.
my niece wore a brace and no one knew it. when she had something she didn’t want to wear it for she just wore it at night. I had mild scoliosis in high school but was deemed to be too late to do anything. My purse slides off my left shoulder, as it is lower, which is no big deal.
Has anyone talked about these Scoliosis Bootcamps? Might be worth asking the doctor about. Random link found upon doing a google search: https://www.treatingscoliosis.com/scoliosis-bootcamp/
I have something to add!! A good friend of mine has a daughter who failed the school nurse check for scoliosis last spring & went to see the pediatrician, saw a specialist at Children’s Hospital (we’re in Boston area so we have good satellite offices w/o having to drive into The City). I don’t remember exactly but I feel like her curve is around 25% & it’s an S curve. seems like that was the figure that is just at the cut off for needing a brace. she is supposed to be in the brace for 20 hrs a day! Wearing it to sleep. If she has a fun day of the beach or outing, she doesn’t have to wear it. She also has to do crazy physical therapy, I forget the method that they’re using but it’s wild. She has to inhale, hold the breath then inhale some more & hold the breath again & finally can exhale fully. Plus all manner of apparatuses to use for the PT & she has to do PT 5-6 x a week for something like 30-40 mins a day. In our area there’s a yoga class for girls w/ scoliosis which can count as her PT for the day & there’s a support group through the PT office. The build up was a lot, my friend & her daughter were both highly upset, many tears were shed. I don’t know how emotional Elizabeth is but I’d say my friends daughter is on the emotional side as an only child. so there were a lot of tears & why me type thoughts before the actual brace fitting. The initial fitting & wearing of the brace was “NOT THAT BAD” so it was less horrific than they were expecting. The real issue is when they have to adjust the brace, they add padding & this creates discomfort & is akin to getting your braces tightened in that it’s uncomfortable & mildly annoying until you adjust. Another test will be when school starts, there’s the worry over what classmates might say. Another thing is you have to wear specific tank tops underneath the brace & some girls choose to layer & hide the brace while others will just wear the brace on the outside. I have to say the actual brace has cute designs on it & was less torture device looking than I expected. Apparently YouTube has a lot of videos & tips if you search there.
I hope this helps & I look forward to hearing more of your adventures into new Children’s Hospital. Hope there is better food there.
Schroth Method?
I know nothing about it but am sending my biggest hugs and best wishes. And that’s lame; but true…
Hoping things have progressed considerably since Deenie’s time, and that everything turns out well for Elizabeth. Wishing you both extra spoons.
I vaguely know a teenage girl who came to visit and the woman I know her through told me she wears a brace for scoliosis. Had I not been told ahead of time I would never have known. I do know she is vaguely embarrassed about it (enough so that that’s why I was informed; we were taking them to the beach and it was explained to me that she would need a place to remove her brace since it couldn’t get wet). But we also went to an amusement park and apparently she wore it the whole time and I never would have guessed.
I’d like to share my experience, and offer some insight. I was 10 years old when I was diagnosed with Scoliosis, at about 25’ and 30’ degree curves (I have an S curve, and a little C curve along my neck). When I was 12 I started wearing a brace. I’ll be honest, it sucked and was painful, but I adapted. I had to wear my brace 24/7, could only take it off when I showered. I wore a thin tee shirt (like a cami) under my brace, which helped protect my skin some, but I still chafed and had blisters the entire time I wore the brace. I also wore another thin tee shirt OVER the brace, because all the screwheads created holes in my clothing, so my shirts were forever getting holes in them. My dad put strips of moleskin over the screwheads, and that helped. I think people could tell I wore a brace, because part of it came up by my neck, and there was a “flatness” to my torso. Also, it affected how I bent over, etc. I wore the brace for 2-1/2 years, but I grew so fast it couldn’t compensate and my curve became severe.
When I was 14-1/2 I had back surgery – a Harrington rod insertion with spinal fusion along my thoracic curve (the doctors felt straightening the top curve would result in a natural straightening of the bottom curve). I was in the hospital for 2 weeks, on bed rest for 3 months, and I wore a different brace for 6 months after the surgery. I was considered fully recuperated at 1 year post-op. Everything went fine with the surgery – my largest curve was 65’ on the operating table, and they brought it down to 30’. I eventually “settled” at 35’/40’.
I don’t think my life has been impacted too much because of Scoliosis. There are annoyances, like clothes not hanging right on me, and there is some pain. If I stand too long my back cramps up, and as I’ve aged (I’m 41 now) I’ve started experiencing discomfort in my left rib cage. But overall, I feel like I’m doing pretty good. I have found that staying active is the key to minimizing the pain. I also take turmeric daily and that REALLY helps with my rib discomfort. I would really encourage Elizabeth to try to stay as active as possible, even just walking every day, and really try to focus on stretching to maintain flexibility and core strength.
A Scoliosis diagnosis can be scary and overwhelming, but it’s manageable, and there have been so many progresses since the late 80s/early 90s when I was going through this. And truthfully, I’ve always felt that if I could change one thing about myself, it would be my singing voice (I have a terrible voice and wish I could sing better), and not my scoliosis. 😊
Yes I am with you on this one! Even down to the singing voice. I forgot to mention in my post that I had to wear the brace after the cast came off for protection for a while (that part sucked). Also I was only on bed rest for 6 days and got to be normal after that until the cast came off. I had one of the Pioneers of the surgery (I was Seattle), so he was a very excellent surgeon! And this was back in 76 or 77. Come a long way since then.
I also read that book! And yes, there have been advances. My best friend’s daughter wore one for about 3 years (maybe 2?) I hardly knew it was there. She wore a thin shirt under it as it chafed a bit and I helped her trim a pointy bit on one of the velcro pieces, other than that, she did fine. It was uncomfortable, but she got used to it, and said it was better than the alternative. She wore flowing tops and is now back in more fitted clothes. She did stick to wearing 23 hours a day with an occasional few hours off for a school dance or other event.
Our high school babysitter has scoliosis, and it must have been severe at one point as she had many surgeries before we met her. This is all randomly self-disclosed by her, so I only know the details she offered. I’ve never even considered the notion that she might wear a brace still today, but she must if she’s had several surgeries, and is still young, right? So that right there is good news – I’ve seen her dressed in many fitted t-shirts and never noticed if/that she was wearing one. Also, she is plenty active enough to keep up with my two crazy boys, so that is also a plus. So sorry you’re dealing with another medical issue!
Remember that she’s still growing, so things aren’t set in stone yet — it’s just as possible for her to grow into a healthier spinal position than into a worse one, if you support her as you’re doing. Your doctors will help you. You’re doing a good job. Medicine’s come a long way. And no matter the shape of her spine, she’s going to be fine.
If you’re interested in hands-on care, you can check this website to find an osteopath who specializes in OMT/OMM: https://doctorsthatdo.org/find-your-do#
OMT is hands-on care designed to help the body regain its full range of motion, similar to chiropractic, but in my experience more effective, more permanent, and with fewer treatments needed. And because they’re full medical doctors who can prescribe meds and do surgery and all that jazz, they understand the full range of options available, so they can help you understand ALL the tools available to help Elizabeth.
(I love chiropractors, my granddad was one and if you know a trustworthy chiro, go for it! But if you’re looking for hands-on care with no previous experience, I think an osteopath is a safer bet.)
I had UNdiagnosed mild-to-moderate scoliosis that has always had my hips a bit twisted. We lived in a small town with don pediatrician and no actual MD for much of my life – just a PA who clearly didn’t check. I did a bunch of chiropractic in my 20s to correct it and I still have one hip higher than the other (age 37 now), twisted pants/skirt, neck and posture problems… but most people don’t know or notice, save my husband, who reminds me to sit up straight.
A friend’s daughter, age 17, recently underwent spinal surgery to correct severe scoliosis. Surgery is no picnic and I have to imagine a brace during the growing season would have been preferable, but she was also undiagnosed until very recently.
I tended to be one of those teens who would have loved to be noticed for ANYTHING, even something like a brace, and I would have worn it proudly, much like I did my orthodontic headgear (that only lasted a few days, then it sucked, then I only wore it at night).
My daughter is 7 and has been in a Boston brace for 2 years. Her pediatrician noticed her hairy back at her 5 year old check up and sent us to Shriner’s (thankfully they have a hospital in our city). The first round of x-rays she was a 25 degree curve, the 2nd (or was it 3rd?) appointment her curve had gone to 32 degrees and she was fitted for a brace that day (again, this was at a Shriner’s hospital, so orthotics, x-ray, pt, ot, dr.s office, etc. are all in the same building and we only had to wait a few minutes between the different departments. I can not express how much i love Shriner’s.) & got to pick out the decoration (blue with butterflies). Her official diagnosis is juvenile thoracic scoliosis and spondy lolisthis (her main curve is between her shoulder blades, but there’s another one near her tail bone & she’s pigeon-toed). She will be in the brace until she she a) stops growing approximately 2 years after getting her period; or b) has surgery due to the curve exceeding 50 degrees.
We had a follow-up appointment the next month when the brace came in and she was x-rayed in the brace to be sure it was fitting properly (there is foam glued inside the brace that can be built up or shaved down to adjust the fit). They gave us a schedule to work up to wearing it full-time incrementally. We were told she needs to wear the brace 23 hours a day and that sleeping in it is the most important because that is when the most growth happens, and that the brace is to prevent the curve from getting worse. We were given 3 terry-cloth-ish tank tops to wear under the brace, but we ended up buying short sleeved, moisture wicking “compression” shirts in the boys department of Academy because the brace comes up high under her armpit on one side and the tank tops had too low of arm holes and it rubbed her. The undershirts show when she wears sleeveless tops, but at 7 it isn’t as big a deal to her as it will be later i’m sure.
We go back every 6 months. She takes the brace off approximately 24 hours before her appointment so her spine goes to it’s “natural” state. They x-ray her again and check the fit of the brace. She had to get a new brace after the first year b/c she’d outgrown the first one (this time she picked purple with butterflies). They asked how she does with the brace and how often she wears it. When i told them that she wears it 21-23 hours a day, the P.A. acted shocked and said that they tell people 23 hours a day and expect to get 10, and that we can loosen up a bit and let her out of it more; even going as far as to say she could take it off for sleepovers. At that appointment we were also told her curve had corrected to 26 degrees and that if things continued at this rate, by the time she reaches 10 or 11 she’ll only have to wear the brace to bed.
It hasn’t slowed her down at all, though she has been whiny-er about wearing it this summer (i think mostly because we live in the south and the heat/humidity are brutal, and because we’ve been more lenient–“give ’em an inch” type of thing). She can take it off herself, but she doesn’t tighten it enough on her own, so she does need help there. She wears it during gym & recess at school, but that may change if/when she gets better at putting it on herself.
Sorry I wrote a novel, but I wanted you to know what I’ve learned and hopefully feel better about it. If you have any questions, please feel free to ask.
Hi! My daughter has the same thing, and hers is an S-curve also. She has to wear a brace but right now it’s only at night. She recently had her one-year check up and it hasn’t gotten worse, and it hasn’t gotten better so for now, they recommended that she keep wearing the brace only at night. Email me if you want to talk more about it!
Thinking of you and Elizabeth. And yes, I read Deenie (and all the other books you mentioned). So sorry about it all
I saw an episode of sister wives (reality show) where one of the daughters Ysabek I think… had scoliosis and she wore a brace but it didn’t help so she may have to get surgery but before surgery they decided to try out an exercise boot camp aimed at specific exercises to improve scoliosis. The doctors were all skeptical but there were success stories from the camp so it might be worth looking into?
That is really stressful. I’m sorry you and Elizabeth have to go through this. I hope it turns out to be one of those things that sounds super hard but turns out to be not to bad. Either way, you will get through it. Big love to you.
I have no relevant experience, nor anything of substance to add, but want to say I’m sorry you & Elizabeth are needing to navigate this.
Scoliosis patient here! A long time ago. I didn’t discover mine until I was 16 (1976) and they tried bracing (for about a year), but apparently I was too close to my growth plates being done (in other words no more growth for me). I had both an S curve and a C curve. They hoped the bracing would make both improve, it didn’t but it did help it not get worse. Not comfortable but got easier over time. I slept in it and everything. Finally, in the summer of 77 I had surgery (early days of the surgery they still do). I now have two steel rods and my spine is one bone from the 5th to 12th vertebrae. I was in a body cast for 4 months (actually better than the brace)! But now 41 years later I have no issues (none whatsoever), and I even forget all about it unless it comes up and then I’m like oh yeah… From what I understand the surgery is pretty much the same, but the healing, recovery process is so much better than it was that long ago. It hasn’t kept me from doing just about anything (except backward somersaults…and maybe gymnastics). Tough diagnosis, but I am glad they caught it early on, mine was more severe than 30. Hang in there!
I have an old friend from high school whose daughter had scoliosis, she just had surgery for it and it seemed to go very well. I’d be happy to e-introduce you if you want to chat with someone. Her daughter is a senior in high school, was a cheerleader and seemed super active. In short I agree we must have come a long way (baby), since 1973! Deenie is always always always what I think of with Scoliosis. Best of luck!
I wore a brace for 3.5 years in the 80s. First a Milwaukee brace (the Joan Cusack kind) and the. A Boston brace (nothing that shows through clothing). And it sucked a bit. But also, life as a teen sucks a bit and I’m no more scarred by the brace than I was by more typical high school pains like ripping my pants or that Valentine’s Day where I was the only one of my friends without a carnation from the school fundraiser. So whatever happens with your daughter’s treatment, this too shall pass and perspective is a handy tool.
As an adult, I have very few problems. I did have a little issue with my epidural during my son’s delivery – the medicine looked on one side of the curve and I had a dead leg for a bit. That was annoying and funny and everything worked out fine.
I’m also kind of weak in the core area and I really like to blame that on being braced. But given that I was braced for less than 10% of my life thus far, it’s probably more about my general laziness. Still blaming the brace. ;)
Okay I am zero help with the scoliosis thing – I had a very slight curve suspected by my family doctor that was never followed up on and seemed to be alleviated by 8 years of doing yoga – but your post is ringing a warning bell in my head. Our previous family doctor told us quite awhile ago that there is no need for an annual checkup for any of us. I don’t get one and my kids don’t get one. My daughter is now 12 and I don’t think she’s had a checkup for a few years, only doctor visits when she’s been sick. She does, however, complain of back pain even after we got her a new mattress. I wonder if I should schedule a visit for the lot of us?