Elizabeth was measured for her scoliosis brace, and the brace was made, and then we had a fitting appointment that involved power tools, and now she is “weaning on” to the brace: wearing it for increasingly long sessions for an increasingly large total of hours per day. I meant to do a “What It’s Like…” post for the measuring and another for the fitting, but I forgot, and now already the details are fading.
The gist is that Elizabeth and I both found the measurement appointment very uncomfortable. She had to wear a semi-see-through extremely-clingy long tank-top that looked kind of like an extremely inappropriate dress; I could see her underwear through it. The technician doing the measurements was a man, and he had to do a lot of measuring with a tight measuring tape all over her torso, including her chest, her pelvic bones, and her butt. I was/am mad that they didn’t have a female tech for this. I sat there wondering how much education I would need to be the one to fill that gap.
The final straw was when he had to use a handheld device that touchlessly scanned her shape into the computer. She was positioned facing the screen, and her own 3D shape appeared on the screen as he scanned. Any color for this 3D shape would have been bad enough, but they made it beige. So basically it looked like her naked self appearing on the computer screen, in front of a man and her mother.
The only fun part was that she got to choose what the brace looks like: there were a bunch of solid-color choices and a bunch of patterns.
Elizabeth and I were talking about the appointment on the way home, and between us we easily thought of several ways it could have been less excruciating. One involves an invention (make a totally-hands-off measurement scanner), but the others are all doable right now:
1. Have a female technician. I don’t care if they need to offer full scholarships with pay to get women into this field in our area. FEMALE. TECHNICIAN.
2. If she has to wear a long tight tank-top dress for the measuring, fine. But could it be one we can’t see her underwear through?
3. Patient should be facing AWAY from the computer screen as the 3D scan is being done.
4. The 3D scan should appear in a NON-SKIN-COLOR such as green or red or purple, just in case the patient does catch a glimpse.
Anyway. To his credit, the tech seemed aware of the situation’s potential for discomfort, and made remarks intended to be reassuring: he made sure to tell me that he had an 11-year-old daughter, and he kept telling us what he was about to do and why he needed to do it. And he had a pleasing and non-threatening temperament/manner—almost apologetic. But all I’m really saying with this paragraph is that it could have been worse.
The next appointment was the fitting; that was 4 weeks after the measurement session and was with a different (but still male) tech. The brace had been made, and now a tech needed to make sure it fit Elizabeth well. He put the brace onto her and measured some things; he had her sit down to make sure it still fit well. He asked her if any places were particularly uncomfortable (hard to answer). He then took the brace off, brought it into an adjoining room, and there were power-tool sounds for awhile—maybe about 15 minutes. He came back, put the brace back onto her, checked it again, and said it was great. He said a lot of times a brace needs more adjusting than that (they allow 1.5 hours for the appointment), but that this one had been particularly well made.
He then showed me how to put the brace onto Elizabeth and how to take it off of her. He put two sets of marks on the straps: one set for now, and the other set to gradually aim for once she’s used to wearing it on the looser setting. He went over the weaning-on instructions. I’m too lazy to go fetch them from the other room, but it’s something like: the first 4-5 days wear it 1-2 hours at a time for 4-6 hours total; the second 4-5 days wear it 2-4 hours at a time for 6-8 hours total; and so on. She only has to wear it 12 hours total per day even at maximum, and we are almost there now; yesterday she wore it for 8 hours in one session.
She can remove it herself, so what we’ve been doing is I put it onto her before she goes to school, and then mid-day she removes the brace and leaves it at the nurse’s office. Then, depending whether it’s a day she needs to bring her trumpet home, either I go mid-day to the school to pick up the brace, or else she picks it up from the nurse at the end of the day and brings it home. Now she’s able to wear the brace for the whole school day so we ought to be able to stop these daily figurings-out, except gym class is still messing us up.
(She might end up doing her 12 hours/day at night, but she is supposed to finish the weaning-on period before she starts trying to sleep in it. The tech said that especially with kids, we want to avoid disrupting sleep if possible.)
Elizabeth said I could show you what the brace looked like as long as I didn’t include her face:
Not too bad. She wears a special seamless tank top underneath it (the tank top has a built-in flap that goes between her underarm and higher side of the brace), and after the brace is in place she folds the bottom of the tank top up over the bottom of the brace. Then she wears a regular shirt over it, and if you didn’t know she was wearing the brace you wouldn’t guess it. I can’t even tell, except there’s a little bit of a bump at the back/bottom of her shirt.
Bless you. When Elizabeth was diagnosed I was so sad, because I remember the ca. 1970 brace my friend had to wear. It looked like metal scaffolding, and came up to just under her ears and down to her hips. She could only move her head a few inches in each direction. I’m sorry all of you have to do this, but I’m delighted at the progress that has been made in bracing. Now to work on the female tech issue because YES.
I think the difference has to do with where the curvature is. I wore this exact brace over 30 years ago (well, without a cute print). I was supposed to wear the metal scaffolding one because my curvature is up higher but I cried so hard in the doctor’s office they relented and I wore the kind of brace Elizabeth has for almost 3 years.
I had forgotten how . . . intense the measuring session can be. Our lab does not have the digital measuring device, so we haven’t gone through that. With our Tabitha only (almost) 8, she hasn’t gotten particularly modest/body conscious yet (a truly mixed blessing, lol). I’m surprised that they recommended day wearing to start with. We were told it was more important to wear it to sleep in than during the day, as that is when her body does the most growing and thus, the brace does the most good. Perhaps because she started wearing one at 5 it was easier. We were told that they rarely get complaints from kids about sleeping in the brace and that has held true for us. Tabitha will complain about getting hot (we live in the deep south) and/or itchy during the day, but has never given us grief about putting it back on after her bath before bed. Elizabeth’s undershirt is nice–the ones we were given did not include the flap and were made of a thick, almost terry-cloth material, so we never wear them. We bought “compression” shirts from Academy with short sleeves to prevent chafing under her arms and also because they are made with “wicking” material that helps with the sweating. I’m glad to hear she is adjusting well!
Ugh. What an awkward and uncomfortable experience. I am certainly glad to hear that Elizabeth is nearing the end of the weaning-on process. And the brace looks great! Much more stylish and less bulky than I was envisioning.
Is there an estimate for how long she’ll have to wear it — or is it a moving target?
She’ll have to wear it “until she stops growing.” I gather they can tell when that’s happened via x-rays of her bones, which is interesting. They suspect it’ll be a couple/few years.
Growth plates (or lack thereof) will show up on x-rays – when she’s done growing, the growth plates transition into something else. https://en.wikipedia.org/wiki/Epiphyseal_plate
X-rays of my knee as a kid showed that I had stopped growing around 6th grade, which was an interesting tidbit I did not expect to find out from the x-rays.
Even in this partial picture of her, she looks so very tall and grown up and lovely.
I was thinking the same thing! Her arms are so long! When did she grow into a young adult?! It’s always such a shock that they grow up.
She’s nearly as tall as I am now! It is very odd.
i was thinking that too! she is not the little girl i remenber from the blog!
Wow, what a difference from the old-style braces! I’m super impressed at how almost high fashion that looks.
I totally agree that it should be a woman tech. Dear God Almighty.
I am glad she consented to a picture because I was halfway to googling it before the end of your post!
Kudos to Elizabeth for allowing you to share pictures. It looks similar to what I wore 40 years ago, maybe more streamlined. At a point you hardly even notice it…I had to wear mine for 23 hours a day, but then I was almost done growing when they caught it. Male techs…usually really nice, but still…awkward. I was 16 when I went through, with my father in the room no less, but they did have a female nurse there as well. I don’t think it was quite as intrusive though, no scanners. Glad the two of you talked about it afterwards to help alleviate some of that.
I love the print she chose! Just lovely.
It’s amazing to me that no one in the office has realized how uncomfortable that measuring session must be for young women.
It actually looks pretty cool!
Please send this post to your doctor/the place you went. I can imagine some of the things they could immediately change. And what a benefit that could be for future girls.
So glad the weaning is going well. And yay for Elizabeth being willing to share a photo.
My aunt wore a very similar brace when I was young – the picture of Elizabeth’s jarred that memory lose. I had totally forgotten about it.
Darn it! Loose – not lose.
1. I love that she’s a trumpet player, female trumpet players are always my faves!
2. How does she do with the brace and trumpet combination? I have two new kiddos this year who wear braces (at least, two whose moms have told me!) and one wears it no problem during band, but the other prefers to go change out of/back into her brace at the nurse before and after class so that it doesn’t restrict her breathing.
She can do trumpet + brace, but prefers not to—so it kind of depends on what kind of trumpet-playing situation. If it’s band and it’s an hour into the school day, she’ll just wear the brace; but if it’s after-school practice, or a lesson, she’ll take the brace off.
Hey Swistle,
Would you please tell Elizabeth (but call her by her real name!) THANK YOU for allowing those pictures to be taken and shared. Honestly, I feel very enlightened by having seen them. I had this vision in my head of a metal clunky brace, no idea where I got the image from, but by sharing those she has educated me and surely countless others as well. I am really very appreciative!
Excellent post!
This made me think of a book I read as a kid, which google tells me was Deenie by Judy Blume. In case Elizabeth might like to read fiction about someone else who needed a back brace…
Would she have been more comfortable in bathing suit bottoms or something like volleyball type/spandex shorts?
This post, specifically the comment about Elizabeth allowing you to post the photo of her, made me extremely curious about how much your children/family in general know about your blog. I know you’ve mentioned a few times that they do know about it, and that you occasionally worry about them reading it, but could you elaborate on this? Do they know the name of the page? Do they know the general topics you blog about? Have you ever had an instance of them admitting to reading it, or a suspicion that they had?
As a non-blogger but avid blog-lurker, I am fascinated by this and will read about it in rapt attention.
And, as others commented, kudos to Elizabeth for allowing you to post said photos. I also had no idea scoliosis braces could be so sleek and come in such interesting patterns!
They all know about it and it comes up fairly regularly in conversation. So far I haven’t wondered if the kids have read it, but every so often I wonder if Paul has. He’s the only one I’ve specifically asked NOT to read it; I haven’t said anything either way to the kids, but so far they haven’t shown much interest in it.
I’ve been tempted to post about Elizabeth’s brace before, and have held off. This post resonated with me, though.
I have a scoliosis. It’s probably about as serious as Elizabeth’s, but I never had a brace for it. I did, however, have braces for something else (related to the scoliosis), and there was a periodic 5-hr commute (each way) that resulted in about 2 hrs in the waiting room with and 20 minutes of male specialists asking embarrassing questions to an 11-year old.
I remember being asked if I could be filmed, and being too embarrassed to say no, and walking up and down a corridor (visible to other patients and staff) in my undies and my (first, very new) front-clasping bra. And I remember the specialist asking me about my ‘development’ (me pointing to pictures of pubic hair and breasts that approximated mine, him asking whether I had my period (which I did)). For me, it was mortifying.
I’ve found ways of being comfortable with my condition since then, and there’s no doubt that I would have less quality of life now if I hadn’t had that intervention (in fact, I had less intervention than most, and would have benefited from more). But I remember that awfulness. Medical treatment sucks, and it sucks the most when you’re confronting the permanence and impact of a condition right when your hormones are doing their awful thing.
Discussing your discomfort with Elizabeth, the reasons for it, the things it says about society – those are good things. I can’t think of many better ways to handle that situation as a parent.
And, on a side note, technology has come a long way! I remember the pain of sleeping with my brace on the first night, and the calluses and the long process of finding ways to minimise the chaffing, the embarrassment of having such a visible marker of my weirdness, the seemingly endless trips to add or move padding or hinges. It sounds like a lot of those little (but very life-consuming) kinks have been worked out, and I’m glad of that.
Elizabeth seems like a very cool kid, and a resilient one. I hope the brace doesn’t cause her too much distress, and I’m glad it’s unobtrusive enough for her to decide whether or not she wants people to know about it.
SWISTLE. I didn’t realize until I was done reading that I was clenching my teeth and holding my breath as I read about the measuring. GET A FUCKING FEMALE TECHNICIAN. I’ve had enough with men touching me, even if it’s “required” or “clinical.” I want a woman. Actually, I would specifically like to request a woman who is ALSO fed up with the patriarchy.
YES. YES.
Just an enormous “thank you!” for posting all this detail, and thank you to Elizabeth for the pictures. My daughter is getting x-rayed today for a somewhat crooked-ish spine, and is pretty nervous about the possibilities. I rembemered that you dealt with this a while back, and your summary of what happens at this sort of thing is always so helpful.
(Incidental side-note – mine is an 11-year-old Elizabeth with a twin brother Edward, though those are actual names instead of noms-de-blog, and they go by Teddy and Lizzy. I don’t think I was copying you when they were born!)