Got your back - scoliosis and considerations for management

Anna Marie (0:12 - 0:52)

Hello, welcome to SpineCare's 40 Voices for 40 Years podcast series, a podcast about childhood acquired spinal cord injury and dysfunction, produced by 2SEI Radio on behalf of SpineCare Foundation. We'll have families join us to swap tips and share their experiences on plenty of topics, so lots of big topics, but also the everyday things. I'm the executive producer for this podcast series, Anna Marie Reyes, at the Community Radio Station to SCR 107.3 FM. This podcast's title is Got Your Back - Scoliosis and Considerations for Management.

Victoria (0:56 - 2:02)

Before the surgery, I did a lot of weights and strengthening with my physio, and I felt like that made me so much, but when I needed time off after the surgery, because I wasn't allowed to lift anything, it made it so much easier to come back, because I was already strong before then. I didn't lose as much, and I just had to make sure that I kept straight while I was transferring, which actually was way more helpful with the weights that I did beforehand, because I felt stronger and able to lift myself. I noticed a big difference one month afterwards.

I'm doing a lot of boxing and physio and upper body exercise. It felt like I was able to still move, but yet still making sure that I don't injure myself while trying to keep fit. The surgery doctor told me that I was probably going to end up being a little stiff, but I actually didn't end up feeling stiff, and I could move myself very easily in the very beginning, basically the day after.

Anna Marie (2:05 - 2:47)

And you just heard Victoria Simpson there sharing her experience growing up with spinal cord injury from the age of three. But before her story, you'll hear Dr. Angus Gray joining in today's episode of the 40 Years for 40 Voices podcast. He's an orthopedic surgeon and specialist from the Sydney Children's Hospital in Randwick. He has 23 years of experience specializing in child and adolescent orthopedics and complex spinal surgery. He has a special interest and expertise in scoliosis and other spinal conditions, hip dysplasia, and limb deformities. He's welcomed here in an interview by 2SER's audio producer, Oscar Byrne.

Oscar (2:50 - 3:05)

Joining me now on the podcast is Dr. Angus Gray. Thanks so much for taking the time, Angus, to join. So just to kick things off, what is scoliosis and which kids with spinal cord injuries are at risk of developing this?

Angus (3:05 - 4:09)

There's two brands of scoliosis. There's postural and structural. So if I just bent sideways and someone did an x-ray, I'd have a curve, but it's a simple bend. Whereas the ones that kids get, and adults for that matter, in wheelchairs, it's a structural curve, which means that the spine spins as well. So you'll usually, if you look down on someone's back with a scoliosis of that brand, they'll have a bump on their back. And that's from the rotation. The kids that get scoliosis from what's called in the neuromuscular category, which includes kids with spinal cord injuries or cerebral palsy, or it's a whole bunch of other ones. They get it because there's something with their balance, and it's either based on central control or balance, like in their brain, or there's something with their spinal cord, which is a spinal cord injury, something with nerves or muscles. 

And so there's a whole group of these kids that get what's called neuromuscular curves. And in little kids who have a spinal cord injury, if you have a cord injury that leaves you weak below the arms or even high, there's about a hundred percent chance you'll get a scoliosis developing. It may not be a problem, but it's almost certainly going to develop.

Oscar (4:09 - 4:15)

Okay. And a lot of these kids haven't hit puberty yet. What are some of the implications of age and growth?

Angus (4:15 - 4:48)

The enemy with scoliosis, your enemy is growth. Because if you get a curve when you're little, the curve is driven by growth. And if you get it when you're two or three or four, there's 12 or so years of growth remaining. And the curve is likely to be driven by that process. Often as a little kid, your growth is pretty slow. And so often these curves aren't too problematic until kids get to their growth spurt, which for girls would be about 11 or 12, boys is a bit older. And that's often when the curve can suddenly have a bit of a run and get worse.

Oscar (4:49 - 4:54)

And for parents out there with children, what should they be looking out for? Is there anything they can be doing?

Angus (4:54 - 5:29)

Human eyes are really good at picking up asymmetry. So it's a bend. So often what parents notice is that their child's starting to lean to one side, there might be a little crease in their waist. And they might get that because they have a postural scoliosis, particularly if they're little. Structural curves are when you get that bump on the back. So if you see your kid not sitting straight, look at their back. And if there's, it looks like one shoulder blade sticking up, one side of the back is more prominent than the other, they're probably brewing, they could well be brewing a structural curve. That's what you need to look out for.

Oscar (5:31 - 5:36)

Okay. And how important, it's paramount to have a referral to see someone like yourself.

Angus (5:37 - 6:31)

It's a good idea to get your child seen by somebody who knows what they're looking at. And GPs are good. X-rays are a good place to start too. And most of these kids will end up in front of a specialist at some time. It doesn't, you don't need to rush towards the specialist because usually for the little kids, it's often just observing. There's some investigations that might be warranted early on, but it's pretty rare to be running from, going from woe to say an operation in really quick time.

Most of the time it's, you're checking the kid, doing X-rays and seeing the, saying this, here's the curve. This is what we expect is going to happen. And you get a bit of a plan over the even 10 years about what to do, what can be done with the curve and what might be required in the end.

Oscar (6:31 - 6:41)

Yeah. And I can imagine that sometimes the news is a noise. What is it like delivering that news to parents and helping them understand the process without projecting doom and gloom?

Angus (6:41 - 7:42)

Yeah. It's a good question. One of the things I see, parents often have come, they've Googled up or they've got information from sources that aren't very accurate and they come really thinking the worst and this is going to be a disaster and the child needs an operation or can't have an operation and it's all going to be bad. And I think one of my roles is to make sure, one of our roles is to make sure that parents get a perspective about what the, what the scoliosis that their child has means, what the natural history of it is, which means what happens, what we expect is going to happen over the next 70 years, for example, and what treatment options we've got and what sort of things work, what things don't work and how do they need to treat their child with kid gloves.

The short answer is, hardly ever. Their spine might be bent but it's still strong. They don't have to take any special precautions for their kid. It's just something that they need to be aware of. There are things that they can do to make things more comfortable but it's basically setting out a bit of a timeline of what sort of things might unfold during their child's growth and development.

Oscar (7:43 - 7:51)

And I can imagine a big part is encouraging them to instill the thought in their children's head that they still have a great life and an enjoyable life.

Angus (7:51 - 7:51)

Yeah. And it's not necessarily the end. If you've got a child with a spinal cord injury and it's likely to develop a curve, it's not the end of the world and it's manageable. Simple things like chair modifications, there's a small role for bracing in some curves, but even in kids if they come to an operation for their spinal deformity, which is pretty common, those kids can still play sport, there's lots of things that can be done. These things, you'd hope that the treatment they need for their scoliosis is at best is going to be an inconvenience.

It's a big deal operation with all the risks you'd expect. In places, in the children's hospitals like where I work, we do it every week and for us it's really routine. For kids and parents it's a whole terrifying prospect with all the concerns but it's pretty rare that we come across a spine that worries us. It's, I think, these are fixable. Particularly if it's early, the bigger curves are harder, but you'd rather see kids early, give them a perspective about what they have, what the implications are and then treat them at the right time if they need it.

Oscar (8:58 - 9:09)

Yeah, that's great. And you mentioned that before, bracing. Can you tell us a bit about the potential role of bracing and why quite a few of the kids might try or wear a brace?

Angus (9:09 - 10:36)

Yeah. So bracing, there's different sorts of scoliosis and for adolescent idiopathic scoliosis, which is a really common brand that teenage girls tend to get, about three or four percent of girls can get a curve, there's a role for bracing for them that works really well. It's about 80 percent success rate for the kids that need bracing. In what's, and younger kids also benefit from bracing, in neuromuscular scoliosis it's a bit of a different beast and bracing there is not generally all that successful. 

I'll preface that by saying in the older kids and some younger kids with normal sort of, in inverted commas, scoliosis, bracing can cure or at least stop progression. In neuromuscular curves, the studies that have been done show that you might stop the curve, you might slow it down, but you won't stop it getting to its destination. So that's, we use it from time to time. A lot of kids, their curves amenable to bracing or it's just another thing that they, we don't need to impose on a family, particularly given it's limited goals sort of stuff. 

So if the, in kids who are quite weak rather than really high tone, bracing might have a role, make them step a bit straighter. I'm happy to try it for some kids, but it's not curative, it's just a delaying tactic and if it's more trouble than it's worth, I'd say don't bother about bracing, it's just don't torture yourself or your child.

Oscar (10:36 - 10:46)

Okay, interesting. And in terms of surgery, is it always necessary? What are the different options and what can parents and kids expect post-op?

Angus (10:46 - 13:35)

With surgery, we do it when the curves fail everything else and getting big enough or is going to get big enough to really impact on the child's life and the carer's life too. When curves get big, kids aren't comfortable, they don't fit in their chairs very well, their ribs hit their pelvis, that can hurt. They're often a bit uncomfortable eating, they're often a bit uncomfortable breathing, their chest, they might be a bit more vulnerable to chest infections. Indications for surgery are when we see a curve that's going to impact or is impacting on a child's comfort and health. 

And some kids aren't, you're not going to make their life better with operations. So there's a group of kids who are really frail or very disabled and you think, okay, that curve's big, but the risks of the operation are actually worse than the risks of leaving that curve untreated. So that's a small group. So with surgery, we go very carefully towards it and we involve everyone because in the end, it's the child and his or her parents or carers that have got the call here. And we've had some kids or parents actually who say, Our child's really not fit for surgery and we don't really want to go ahead with it.

That's absolutely fine, I respect that decision and we keep an eye on them, but we can hold off on surgery or stop it all together. We can always go back and do it later if need be. But in the kids that are amenable to surgery, if you're little, we can put basically what it is, it's putting rods in, it's like an internal brace. It's rods inside the spine, anchored to the bones in certain ways. In little kids, we can use implants that actually extend, they can grow with the child one way or the other. And we tend to use those things called growing rods in kids under about 10, 10-year-old girls, 12-year-old boys.

In the older kids where we don't have to compensate for growth, what we do is just put rods in generally from the back. And it's a long cut from between the shoulder blades down to the lower part of the back or the pelvis. And those rods are held to the spine with screws or hooks or tapes as different anchor points. And they make the spine straight but stiff, not as stiff as you'd expect. A lot of kids can still wriggle around and lean over and things. There are some changes but they end up straight and comfortable. And it's a big operation. These kids are often in hospital for a week or two and probably takes about up to six months for the dust to settle afterwards. 

Once that's happened though, the kids can go back to play wheelchair rugby or basketball or whatever they want to do. We do warn them that their flexibility will be changed and they'll have to make some adjustments too. For that, often they'll be a lot taller as they sit in a chair so that chair modifications will need to be made. But kids are really resilient and adaptable and so they can get around these issues pretty quickly with some minor modifications.

Oscar (13:36 - 13:44)

That's great. And in terms of preparing for a surgery like this, what's the best approach leading up to an operation?

Angus (13:44 - 15:40)

For parents and kids, ask questions. Get educated. That should be the role of the surgeon and there's often staff at the kids' hospitals that have got trained in filling in the gaps that the surgeon can't do. Because often if you go to a clinic, things are pretty busy and complicated and you may not get as much as you want out of that consultation. But there are often nurses as well who are specialised in these clinics. Websites, srs.org is a really good one, it's an American one. And you'll lift different brands of scolios to look under the neuromuscular thing. 

So the first thing is education. Second opinion, so if you think you'd like to hear another opinion from a paediatric spine surgeon, that's a good thing too. You get a perspective because sometimes there are options for the treatment of your child's deformity and there are different operations that can be done. So that's something as well. If you want some more information, second opinions are good. Planning for operations, what we do at the kids' hospitals is very carefully approach the operation and make sure that the child is as good as they're going to be. They're really fit. We've done all the investigations we need to go ahead with the operation safely. 

Some kids come into the hospital early to get, say, their respiratory function fine-tuned. Some of these kids are on nighttime ventilation, BPAP or CPAP, and that can be tweaked. There's a really multi-disciplinary approach here. It's not just a surgeon going in and putting rods in the back. There's a lot of other doctors and clinicians involved that want to make sure that child is as good as they're going to be for the operation. Often we'll plan things not for winter, if a particular kid's a bit vulnerable to chest infections, we'll do it in the warmer months. There's a lot of planning involved and also a lot of planning with the family. These operations aren't urgent, so we'll often look for a convenient window, if possible, to work around the family's needs as well.

Oscar (15:40 - 15:51)

Yeah, fantastic. I think on that note, Angus, I've just got to say a big thanks for joining the podcast and shedding really interesting insight into scoliosis. Appreciate it.

Anna-Marie (15:52 - 16:26)

And you just heard 2SER audio producer, Oscar Byrne, speaking to Dr. Angus Gray, an orthopaedic surgeon and specialist from the Sydney Children's Hospital in Randwick, and ending that interview. And now over to Victoria Simpson, who's also joined by her mother, Deanne. Victoria came back from the Wheelchair Basketball World Championships in Thailand, being part of the Australian Under-25 team since she was 13. She's also been awarded Junior Sportsperson of the Year in 2020.

Victoria (16:30 - 17:19)

So I've always loved sport and have been really active. I first started playing wheelchair basketball at age 11, and I really love it. I also used to do elite track racing. I got my first track chair when I was 5, and I used to be up at 5am most mornings for training. I also love, in my spare time, I love to go water skiing, and I also love quad biking. And I just celebrated my boyfriend's 21st birthday as well. So I'm 19 now, had my spinal cord injury since age 3. It was from a car accident. I'm a T10 paraplegia, so that means that I cannot feel or move below my waist. I'm also studying to be a School Learning Support Officer at TAFE New South Wales.

Deanna (17:19 - 17:57)

So we're from Parks in Central Western New South Wales. I have three children, so Victoria and two other boys, Patrick and James. We're a very active family, obviously being from the country. We motorbike, ride and camp. We have a boat where we water ski. All the kids water ski, including Victoria, who uses a sit ski. We do a lot of family holidays, especially when she goes away for sport. And we've been around Europe in a motorhome for two and a half months. We went around all different places, and we've been around a bit of Australia, and we've got our own caravan so that we get to go.

Anna-Marie (17:59 - 18:04)

Deanna, as a parent, so much to understand. What advice would you give to others travelling a similar road?

Deanna (18:04 - 19:58)

The doctors give you a bit of information. They talked about that she could potentially get scoliosis when she was a teenager. So we actually had a doctor who we'd see once a year, and then I think it was every two years. And then when she was probably 12, 13, after we come back from Europe, we realised that she was quite crooked. And then they tried to do a few things with her hips and everything, but it didn't work. And so they had to make sure that they wanted to give her a back surgery, which meant that they had to fuse the whole back to the hips.

But unfortunately, because she's in a chair all the time, even though we had a standing frame, she did RGO, she did tummy type, she was active, she did exercises, she did physio, it was inevitable that she would have, obviously, scoliosis. But I think for her, because she is so active, it's not as bad as that the doctors have seen before. Unfortunately, one suits all style of surgery. So we got a second opinion, we could do it different. And I'd asked other people that I knew had a spinal cord injury or had a spinal surgery and asked what they were doing, what their doctors were doing, what happened. One boy I knew had it all fused and what his limitations were.

So I think the thing I tell people all the time, unfortunately, this sort of stuff is inevitable, obviously, with a spinal cord injury and them being seated all the time. Life's busy and you can't do everything. And you just need to do your own research. And you need to ask a lot of people a lot of questions. Don't just settle for one person's opinion.

Anna-Marie (19:59 - 20:08)

So can I ask Victoria, when you made the choice to go ahead with the recommendation to have your back spine straightening surgery, at what age did you have it done?

Victoria (20:09 - 20:12)

So it was in 2021, I was 15.

Anna-Marie (20:13 - 20:23)

Okay, you were 15. So how was life changing for you in the lead up to this time? And what guided you in your decision about surgery? And I also would love to hear from Deanne as well.

Victoria (20:23 - 20:41)

Obviously, at the age of 12, I started noticing like my back curvature more and like how much it would cause like back pain, as well as I found it very hard to be able to sit up straight. And I had to keep very direct positioning myself. 

Deanna: 

She had a rib that was starting to jut out. Obviously, they were talking to us about the position that she was sitting in at the time. We tried to put certain things in, in her seat. We had lots of interviews like with the spinal cord specialist, Victoria's physio, they come out, they've made a brace to simulate what she would be like and what she would miss out. And she fell out of the chair a couple of times and really struggled to manoeuvre as much. We had like video where we'd watch how she transferred and did things like that. So that sort of showed us that if we did the hips, it was going to limit her life. We said before, we're very active families doing so well with the basketball and even the track.

Anna-Marie (21:28 - 21:35)

So the people that are listening to this podcast, I'm sure they want to know what actually guided the decision making for surgery?

Deanna (21:35 - 21:41)

We had the back brace for ages. We did as much as we could.

Victoria (21:41 - 22:27)

My decision for the surgery was I was given a brace and I had to wear it for a few months to simulate the first surgical option, which was to connect it to my pelvis. And so like my mum said, I fell out of my chair and I physically could not get myself up. And I was just really stiff and it made it so much harder to transfer, to play basketball, all that kind of stuff that I did not want to, I did not want to make it any harder than it already is. I didn't want like the rods, my spine connected to my pelvis because it just, it would have made it so much harder than it had to have been. And my mum said we're very active and I'm very active and I wanted to continue being very active. We decided to not go for the first surgical option.

Deanna (22:27 - 22:59)

And like we said, we asked a lot of people, she's around the basketball community, around the track community. We asked a lot of different people and we tried all these different things like the brace and all that. And we just, these things aren't reversible. So you do the whole thing at the one time and then next minute your quality of life's gone. And to just ask people, talk about it. And I think as a parent, you're knowing yourself whether you're happy with the decision. And I think you just need to go until you find the decision that works for you.

Anna-Marie: (22:59 - 23:07)

What was the most helpful for you in preparing for the surgery, and then in the recovery phase after, are you glad that you did it?

Victoria (23:07 - 24:39)

Before the surgery, I did a lot of weights and strengthening with my physio. And I felt like that made me so much for when I needed time off after the surgery, because I wasn't allowed to lift anything. It made it so much easier to come back because I was already strong before then, I didn't lose as much. And of course, like I said, like after I wasn't allowed to do sport, I wasn't allowed to lift anything that was above a certain weight. And I just had to make sure that I kept straight while I was transferring, which actually was way more helpful with the weights that I did beforehand, because I felt stronger and able to lift myself.

I noticed a big difference one month afterwards. I'm doing a lot of boxing and physio and upper body exercise. It felt like I was able to still move, but yet still making sure that I don't injure myself while trying to keep fit. Doctor told me that I was probably going to end up being a little stiff, but actually didn't end up feeling stiff. And I could move myself very easily in the very beginning, basically the day after. I felt like I was able to just get out of bed, go to the bathroom myself and do all that kind of stuff, which they said that I might not be able to do. And the changes that I noticed after the surgery, which made it really worth it, was I don't have to readjust myself as much as I used to have to.

Deanna (24:39 - 26:55)

We didn't know how able she would be. So I was doing weights and things like that as well, keeping myself strong so that if I needed to lift her, I was capable and strong. She didn't need me. I felt like I was only going to hurt us. She was quite capable, also obviously was strong and the surgery wasn't obviously as debilitating as we thought. Obviously, anyone that does surgery, I've had a seizure, you can't do anything for six weeks. She was up and moving and she was amazing. She just bounced back so well and she just needed a few little extra things for what he wanted her to stay nice and still to keep the not doing anything dramatic, while it was all settling and obviously regrowing and calcifying and everything. 

We were very lucky we had South [?Cots]. We stayed there. We stayed there so that we're in Sydney because Parkes is very limited with this sort of knowledge and I didn't want to have to be driving back and forward. So we stayed a week up there, which really helped us. Just, I guess, that security of knowing that if we needed to get in the car and drive back to Randwick, it was only 45 minutes at most and all her doctors are there and you're not explaining for any different things. 

Just the way photos you look at when she was younger, she sits up straight. I guess her ability to do things, to hold herself up, it's so much easier. She still water skis, she still horse rides, she still can go in the track there, she still can do basketball, she transfers in and out of the car by herself. She can put her own chair in her car by herself. She's so strong. She's still a little bit not straight, but that's to do with her hips down the bottom, which we knew that with the pelvis. 

But yeah, no, 100%, she's so much better off because she's just had this small bit and he said that, he said, even if we just do this bit, she'll get 10 years before we have to do anything else. We're so happy that it's all worked out and it all did. It worked out so well in the recovery time. Getting a bit stir crazy at the end, but that just shows you how well the preparation before was and that the surgery wasn't so dramatic. It was just a nice little surgery.

Anna-Marie (26:57 - 27:08)

In any medical procedure and decisions about surgery, especially spinal cord injury is huge. Any messages you want to share with other families and young people?

Victoria (27:08 - 27:39)

I find that I learned to be independent from a very young age. I don't let anyone push me around physically. I won't let anyone touch my chair unless I need the help. Even if I did need help, it'd probably be from my family that I'd ask or really close friends. I feel like also always talk to your parents about everything, all your decisions and making sure that you always have your parents on board with any medical decisions affecting you, and... because it doesn't just affect you, it also affects your family.

Deanna (27:40 - 28:30)

I think the main thing is finding someone that has the same ideas as you do. I think as a parent, you've got to live with the decisions you make when your children are under 18 and they affect the rest of their lives. You have to know 100% in yourself that you're making the right decision because I'm not living with the spinal cord injury, she is. And I need her to understand the decisions and why we make decisions, and obviously, I'm going to discuss it with her and her father and we're going to have a real honest conversation because it affects her and it affects me. I always explain to her why I'm not happy with something that they're telling us or why I think that this is not a good idea. 

We're living with it. It's their everyday life and I want to give her the best life I possibly can.

(MUSIC)

Anna-Marie (28:33 - 29:19)

And you just heard from our guests, mother and daughter Deanne and Victoria Simpson. And before that, Dr. Angus Gray, an orthopaedic surgeon and specialist from the Sydney Children's Hospital in Randwick and ending this episode. You've been listening to SpineCare's 40 Voices for 40 Years, produced by radio 2SER-FM. You can subscribe wherever you get your podcasts. 

This series is recorded in Sydney. We acknowledge the Gadigal people of the Eora Nation as the traditional owners and ongoing custodians of the land where we record this podcast. We extend our respect to the traditional owners of the lands that you and our guests join us from. I'm Executive Producer Anna Marie Reyes, and see you in the next podcast.