Brace Yourself for Ava’s Spinal Adventure: A Girl Scout’s Tale of Scoliosis Triumph

Ava’s Podcast

Rita: Hi everyone. My name is Dr. Rita Roy, CEO at the National Spine Health Foundation, and I’m your host for the Get Back To It podcast where we tell real stories of healing and recovery.

What does it mean to get back to it? It means overcoming spine problems through treatments that work in order to return to the people and activities you love. Whatever that looks like for you. It means getting back to your life. We’re here to share the success stories of those who did just that, and some of these stories you’re not going to believe. At the Give Back to It podcast, our goal is to tell stories of spinal champions who’ve been able to achieve a better quality of life through spinal healthcare. In today’s episode, I’m delighted to be speaking with Ava, a 17 year old spinal champion and a devoted Girl Scout, who was diagnosed with scoliosis four years ago at her annual checkup. Her parents wanted to avoid a surgical approach, so they took her to a scoliosis clinic whose focus was on non-invasive approaches to improve her curve. Her journey has not been easy, and she’s been wearing a back brace for three and a half years now. Now that you know what to expect, let’s get back to it and dive right into Ava’s story. Ava began her journey when she was 14, when during her annual checkup, her doctor asked her to do a forward bend test, which concerned him enough to order an x-ray.

Ava: I had the x-ray done and my doctor called my parents that evening to tell them that I had scoliosis, and it was a lot worse than he thought, with a curve of 36 degrees.

Rita: Ava’s parents were looking for a non-operative approach. so they did a lot of research to find a scoliosis clinic.

Ava: My parents found a clinic that specialized in a non-invasive treatment of scoliosis. My journey going forward was not easy.

Rita: Ava’s treatment regime was difficult and required Ava to incorporate a daily exercise routine as well as being required to wear a back brace for 23 hours a day.

Ava: I was lucky to never have any pain, but I had to learn that stopping the progression of the curve was important for my health in the future.

I am 17 years old now, and I have worn my brace for three and a half years.

Rita: Ava has now begun to wean off her brace. And her curve has dramatically improved to a 15 degree curve. Her commitment and hard work has paid off.

Ava: Because I am weaning off the brace, I’m now wearing it for 10 hours a day instead of 23, and I’ll continue doing this for the next nine to 12 months.

Rita: Ava, your story is so inspirational because at such a young age, you understood the importance of being diligent and consistent with your exercises and wearing your brace in order to position yourself literally for the best possibility of avoiding future spine health issues. Looking back on this experience, Ava, how did it feel to have your parents involved, in so proactively working to find the right treatment for you?

Ava: So I believe I was very grateful, first of all for my parents. Um, when I first got told I had scoliosis, this was before I even knew it was so severe. I honestly thought, like I had no clue what it was. I was 14. It was actually being talked a little bit on TikTok for some reason. So I was like, I’m gonna be cool.

But then he was like, oh, it’s a curvature in the spine. That’s what my doctor said. And I was like, is this gonna like make me die earlier? That was literally my first thought, which obviously is not true. But again, I had nothing to go off of. I had no clue what this was. So I’m so grateful that I had parents that really looked into this and did lots of research.

I then later learned that I’m not gonna die from scoliosis. I was also really grateful that they looked into so much different research. We went to lots of different clinics and like lots of different doctors. and you know, at first I was like, why do we have to do this? But now looking back, obviously it was important and I’m very grateful for that.

I just believe that they were really the core reason as to why my scoliosis is not as bad as it used to be, because at 14 I would never have done anything. I was 14. I was worried about if I’m gonna look good today or if my pants still fit me,

Rita: Probably didn’t even know how to spell scoliosis, right.

Ava: Yeah.

Rita: it’s a big word. One of the other, um, medical ways of describing scoliosis is to use the word deformity. And, you know, we often talk about how that’s a really tough word for young kids to understand deformity is a medical term that describes what’s happening in your spine when you have curvature or abnormal curvature like a scoliosis. But deformity is a hard word for young kids to, to, deal with.

Ava: Absolutely. I think the word deformity, even though that is technically what it is, there’s so much negative stigma around the word deformity, so I just feel like that’s not necessarily the right word to use when introducing scoliosis to a kid.

Rita: No, I, I agree. And there are actually, um, scientists who specialize in, in scoliosis research who have studied looking at, um, the use of that word.

Ava: Absolutely. There’s so much stigma around specific words, ex there’s also like stigma around words in learning disabilities. It’s the same concept.

Rita: Right. So one of the things that you’ve done, Ava’s, you’ve been doing a lot of research and you’ve found the National Spine Health Foundation. Talk to me about the experience of finding this organization and, um, and how you came to know us. Ended up here on the podcast.

Ava: So I’m currently working on my Gold Award for Girl Scouts. It’s the highest and most prestigious award in Girl Scouts. It’s like a eagle. But for Girl Scotts,

Rita: Congratulations.

Ava: And, um, we are doing a lot of research. Me mainly, but I have help with my advisor and we are working on doing as much outreach as possible.

So we emailed lots of clinics, we posted on lots of Facebook groups. You know, we just happened to be, and I think that is, it’s, I’m very grateful for that. I can spread my story and you know, it’s both benefits for you and me.

Rita: Yeah, for sure. I mean, I think one of the things in the foundation that we are very committed to is, raising awareness of the treatment options for various conditions. And, you know, we, we often message around the importance of getting more than one opinion on your treatment. It sounds like, you know, your parents did, did a lot of that legwork with you as you described but there are lots of ways often times to, to treat, conditions and there. there are medical ways of treating conditions and ultimately surgeries at, at the far end of that. And, you know, there are times when surgery is appropriate and times when there are other, other ways to try, uh, before you get to surgery.

So we talk a lot about that here at in Foundation and it’s really, it’s just delightful to have met you and your Mom in knowing that you found the work that we are doing in raising awareness, helping raise awareness of, of our work too.

Ava, talk to us a little bit about advice that you would give to other young, junior high schoolers or young high schoolers who have to wear a

brace.

Ava: I would say relax, it’s, it’s not that big of a deal. It may seem like a big of a deal, but it’s really not. It seems daunting, especially when I was younger. I had no clue I mean, I knew what I was wearing it. For, but I just didn’t see a need for it because again, I was young and I was worried about, oh my friends, so they’re still gonna like me.

But especially as you get older in the high school or even in middle school, it’s not that big of a deal. There are so many other people in the world that wear a brace and there’re just so many other distractions in the world. Not many people care, and if they do care, they’re not worth your time. It’s not something that should be that daunting on your life.

Rita: Ava, were you wearing your brace during the covid time?

Ava: I was,

Rita: so how did that affect your, your life honestly, I was grateful that I wore it during

Ava: Covid times because I was still in middle school. So I was like, oh, this is the perfect time to wear it and.

Rita: kind of was in a way

Ava: Yeah, exactly. But also because I was in Covid and I was so bored and I wasn’t distracted by other things. Wearing the brace was harder because I know this is different for other people. Some people wore it more, but because I had nothing else to think about, I would just always be remembering I’m wearing this thing on me, and I, I believe I wore it less in Covid.

Rita: Interesting. That’s such an interesting, uh, way to think. I didn’t even even think about that, but I can see how you don’t have the distractions of a normal activity, uh, to take your mind off of it.

Ava: Exactly.

Rita: What kinds of activities are are you involved in

Ava: Well, I’m currently doing a sport, not at this very moment, but it’s a fall sport. I do field hockey. Um, I do not wear my braces during that because it can be very bad for the, my teammates or other players, especially if I like run into them or something. But, yeah, I’m doing field hockey. I also act, I love acting.

It’s very fun and I’m working on going to college. That’s another thing. I’m excited for that. And I work, I have a job at Trader Joe’s.

Um,

Rita: Wow, you are

Ava: I know it’s a lot, and on top of that, I hang out with my friends,

So

Rita: that’s a lot.

Ava: yeah.

Rita: So that’s, that’s, great that you’ve been able to do all those things while managing, wearing your braces, staying in sports and a job and going to school. And that’s, that’s just a lot. But to your point, being busy helps also take your mind off of the fact that you’ve gotta wear that. So, was it uncomfortable? Or

Describe to me, The the feelings that you had to manage

Ava: So my brace for starters was very just not something I liked. It was very uncomfortable at first It was like getting braces or Invisalign on You’re, your body isn’t supposed to be doing that, but it is. So it just in the most. Weirdest way. It was uncomfortable and it felt like a corset kind of, but more

internal. That’s the best way I could describe it, and slightly painful. But after a while, none of the pain was there anymore because I got used to it and my body got used to it.

My spine became more flexible. It was, it was kind of like a muscle At first it’s really tight, but then after you keep stretching, it’s not as tight, so it doesn’t hurt as much.

Rita: Yeah. That’s that. Amazing. Um, that you managed the discomfort that came with having to put the brace on and and resizing. Right.

Did you have different sizing, um, times where they were adjusting the brace and so forth? What was that like?

Ava: Yeah, we had, um, I believe the hardest part was when they were scanning my body for a brace. So what they did is they put me on this like, table with plexiglass. So it was like clear and then, They put like straps on where they believe my brace should be. So like my body was all like twisted, not twisted.

It was like all pulled in weird spots and they were like, don’t even breathe. If you breathe, you’ll mess. You’ll mess up the scan and then we’ll have to redo it. I believe that was hardest part.

Rita: Old still. Yeah,

Ava: Yeah, I know it was. I honestly think I was being a little more dramatic than I had to be, but it was very, I was very like, Ooh.

Rita: So Ava, were there, were there any other kids in your school that were braced? Did you know anybody that was wearing a brace?

Ava: There was actually, there was um, a girl, her name was Ava, and, um, I know right, I was very open about wearing my brace, and this was during Covid times, so over Zoom. She was in my writing class, so I believe I wrote something about wearing a brace. And having scoliosis. And she private messaged me and was like, oh, I have scoliosis too.

I wear braces. Well, and again, she never really was open about it. She just told me, cuz I was open about it and I would’ve never known, especially when we went back in person, I would’ve never known because she doesn’t look like she’s wearing a brace.

yeah. And I believe because I was so open, Me wearing a brace that it helps her be a little more open about it and to tell me about it. but, you know, I don’t know her that well, but we have like this sort of bond that not many other people have.

Rita: That’s, that’s amazing. And, and I, I know that you’re trying to reach out to other young, young girls in particular who are, are going through treatment of wearing a brace and, you know, figuring out how to get through PE class or get through the day and, you know, having to put it in the locker, make sure it fits in the locker, and, Um, like playing Field Hawking, having to take the brace off for that hour and a half or two hours that you’re doing that, where, where do you store your brace?

So what are some of those practicalities about caring for your

Ava: so I’m not the best example for that because I never had a locker. Um, our schools just didn’t provide lockers. Um, and so before I had a car, I would just hold it with me and everywhere go. And of course people would ask, what is that? So I would I would say that it’s a football gear sometimes if I just didn’t wanna explain it

Rita: Yeah.

Ava: or I would put it on my head as a. Um, because I mean, if I’m gonna have this thing, might as well use it as comedy, right? And, um, but if I was for instanced playing field hockey, I would just leave it next to my backpack. It wasn’t a big deal. Because even for like my teammates, they would be like, what is that? I’d be like, oh, it’s my back base.

I have scoliosis. And they’d be like, okay, I’ll never be brought up again. It’s just, it’s Just another thing. that people carry. Yeah. And, but now I have a car, so I put it in my car. Um, so it’s not as, I guess out in the open, but you know, people don’t really care.

They don’t even look at it.

Rita: Well, and it sounds like you carried it with confidence and I think that that helps other people feel comfortable also,

that Oh, Ava’s, that’s her Scoliosis brace and cool. She’s doing her

Ava: Yeah.

Rita: you’re doing you,

Ava: anything, they’re just curious. Yeah. If anything, they’re just curious. they’re not trying to. think of it in a negative way. they’re just they’re just wondering what it is.

Rita: Wondering what it is.

Yeah. And that’s, that’s an opportunity there for you to. Educate other people, right? Like, yeah. No, that’s Great. Ava, what would you tell people about how to go about finding information about scoliosis? Um, if if someone came to you and said, how do I get more information about this? How do I know what to do?

Ava: So the internet, is your friend. There’s so much stuff online. Um, don’t just. at the first thing and be done with it. Even if the first thing is your best option, you should always look for other alternatives. Talk to other people just to see what there is out there. If there is anything better for you, it’s what you are willing to do and what you’re, how much you’re willing to commit.

Rita: Right. And we say, you know, here at the National Spine Health Foundation, we pride ourselves on being an unbiased, you know, vetted source of information where we’re, we’re presenting the truth about spinal healthcare, and, helping people figure out how to make those, good decisions for themselves. And each, each patient is different.

Each body is different. There’s no cookie cutter approach to, to your spine. Or to your health. We work in close partnership with an organization called the Setting Scoliosis Strait Foundation, and a lot of those folks are very involved in, scoliosis research and, putting out the, the latest in treatment vital modalities.

Lot of the, um, doctors on that board. Not all, but some are world class surgeons and I think it’s so interesting that 80% of the time when a patient presents themselves to a spine surgeon, surgery is not the thing that that’s indicated. So you, you gotta get yourself to the right provider and, and make sureyou inform yourself of the treatment choices

So that, that’s great. Well, Ava, is we haven’t talked about today that you’d like to mention?

Ava: I guess because I was talking about my brace, I guess I would like

to talk about the treatment I went through. Um, so I took an alternative treatment route. So I had to go undergo a lot of physical therapy. then we also did a lot of exercise that I believe, Whether you’re going through an alternative route, going through surgery, or just planning on doing nothing, I believe exercise is so important. So we would do core. So we do lots of core exercises to stabilize our spine and just so you don’t have pain.

And they suggested running, and then we did lots of leg extensions. Stretches, which help with your spinal cord or your spine. just your nerves. Your spinal nerves.

Rita: Well, just flexibility and in general is gonna help support all those muscles that are supporting your spines. That, and, and you’ve got a chain that goes, you know, from your toe, you know, through your ankle up your, the back of your legs, you know, past your knees, up your. You know, your thighs and, and, uh, connecting onto various attachments along the spine. So it’s awesome job to do that exercise and to have that awareness at such a young age. That’s

Ava: yeah. Well, I was, honestly, this was, this awareness was almost forced on my throat even because I was, as a child, I really didn’t understand.

Rita: What is the core? What does that mean?

Ava: I don’t I don’t, have any pain right now. Why do I care?

But, you know, with this, with this stuff in my mind, and then getting older and maturing more, I was like, oh, okay. I connected the dots.

Rita: That’s great. That’s amazing. It’s like, it’s like saving up money in the piggy bank for the future. You know, you’re you’re building strength and, and flexibility and, and, um, you know, working on your, your development as your bones are growing so that your future can be

Ava: exactly. And it’s, that’s the biggest piece of advice I have. Even if you’re older and you have pain, You need to exercise because first of all, that pain will go away. But I know someone who has, I think like a 30 or 40 degree curve and she had pain and, but now she does, she’s in her thirties or forties or fifties.

She’s had kids But she does a lot of ballet and she’s a very active person, and now she doesn’t have any pain because she’s active and she’s building up all her muscles to help support her back. And that’s just, that’s something I plan to do my whole life. not only is it, is it good for my body, just in general, but it’s good for my back.

Rita: That’s great. that’s true for everybody that, you know, we say motion is lotion. That body and motion stays in motion. So movement is important. In fact, there’s a lot of science around the importance of movement to various conditions, um, and managing pain with, definitely with osteoarthritis and, and Degenerative conditions that can affect the spine. So, so lotion is important. You’re absolutely right. You gotta exercise. Find an exercise,program that you enjoy doing, whether it’s. Walking every day or biking, swimming is a great activity. You know, find, find the thing you love to do. But also, you know, you’ve, you’ve been talking so much today, Ava, about understanding the core muscles and supporting your spine through your life, and that’s, that’s true whether you have curvature or you don’t have curvature maintaining core stability and core strength only helps your spine as you age certain. Degenerative conditions in your spine as you age can cause scoliosis in adults, or it can take, uh, a kid who was successfully treated and, and that can change over time. So, so looking at that so, well, Ava, it has been such a delight to meet you and to hear your story. Sharing it with the community, no doubt will help other people make, make good decisions as well. we thank you for being willing to share your story.

Ava: Thank you. Thank you. I am so grateful to be talking with you. guys as well. I love what the National Spine Health Foundation is doing. I think what they’re doing is really great. Thank you so much for letting me share my story.

I’m really grateful to be here and I’m really happy to be talking with you

Rita: and Ava, tell us about your, uh, video channel that you’ve, you’ve created as part of your gold, uh, gold award project,

Ava: So I’ve created a YouTube channel that is from one girl to another with scoliosis. When I was starting my Girl Scout project, I noticed that there was not many supports from one girl to. And so I decided to start a YouTube channel and it’s just exploded from there.

I have so much stuff. I’m talking to so many people. I think it’s, I’m, I’m very grateful for that. And um, the name of the channel is Embrace the Brace with Ava, and you could totally check it out if you want. I have lots of videos on there. If you want me to answer any questions You can chat me on Facebook or just leave a comment In my videos and I will try to get to them and yeah, go ahead and check it out if you want some

Rita: Great. Thank you, Ava. thank you for being willing to share your story. We wish you really good luck with your Girl Scout Gold Award project.

Bravo.

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