Dance Stories: Devon Campbell, Scoliosis, and her recovery from Vertebral Body Tethering surgery
Brave: one simple word to sum up the unstoppable Devon Campbell. A dancer since the age of 3, Devon was diagnosed at 13 with Adolescent Idiopathic Scoliosis, also known as curvature of the spine. Determined not to let her condition prevent her from doing everything that she loves, Devon lived with her diagnosis for years until she learned of a revolutionary procedure that would help to correct the curves in her spine without restricting her freedom of movement. After undergoing surgery in January, Devon is dancing again, with big hopes and aspirations for her future in the industry. We chatted to her about her journey, and her determination to keep dance in her life despite the challenges she has faced.
Devon is full of energy when she arrives at the Energetiks Head Offices, and as a previous employee (you might have seen Devon in our Fountain Gate store), she is greeted warmly by the team, many of whom haven't seen her for some time. We are excited to hear all about Devon's life-changing surgery and how she is coping with her recovery, but first we chat about her start as a dancer. "I had just turned 3," she begins, "and I was a really clingy kid. Mum could never leave me anywhere, and I wouldn’t go to some people, I would just scream," she says. "I was going to be a flower girl at my uncle’s wedding, and my mum was worried that I wouldn't handle it, and that I needed some kind of practice. Mum knew Jane (Principal of the Jane Moore Academy of Ballet in Highett, Victoria) already, so she decided to bring me to dancing just to give it a go. Mum dropped me off for my first class and I was like 'Bye, mum!', and just walked in, no problem," she laughs. A natural talent, Devon continued to train in ballet, before starting jazz and tap at around 12 years old. It was soon after this that she received her diagnosis.
"I had a sore back at dancing," she recalls, "so I asked my brother, who is an osteopath - he was at university at the time - to have a look at it. He noticed that all the muscles were really tense, and he was worried, so I went into one of his lecturers to be treated. They actually thought it was a stress fracture, due to the way the muscles were responding. Of course they did an X-ray and that's when we found out it was Adolescent Idiopathic Scoliosis," she explains. "I went to have an official diagnosis at the Children’s Hospital, and they immediately wanted to put me in a Boston Brace, which is essentially a cast around your body. Going through that diagnosis it was like, 'Here’s a piece of paper with the information, now go and get your brace, and you have to wear it for 23 hours a day.' There was no discussion, so I’m really lucky that my family said 'Let’s put the brakes on and do the research', and my physio who was also treating me said 'It’s your journey, and you need to decide where you go with it'. I would have had to take the brace off to dance; to sing; to play clarinet; so I wouldn’t have been wearing it enough to merit getting a good result. And within that I would have lost lung function and muscle development," she says.
Devon was very clear that she didn't want to do anything that would prevent her from doing what she loved. She started seeing an orthopaedic surgeon, and discovered a soft brace, which she wore for just under two years. Scoliosis is very unpredictable, so it was hard to know if the brace was helping or not. Eventually, she stopped wearing it and instead focused her efforts on managing the condition with exercise and activity. "I wasn’t in a lot of pain," she says, " but after a big day I would wake up stiff and a bit sore." When she was 16, her surgeon wanted to operate, recommending Spinal Fusion. The procedure involves removing the spinal discs, putting everything back where it should be, and putting a metal rod in place to keep everything aligned. Devon said no. "I would have had very little movement," she explains, "and in theory I would have been able to go back to dancing, and some people do, especially those people who have a shorter fusion, but it’s a lot harder. My parents said it’s your body, your life, it’s up to you. In the end quality of life is always going to be more important to me than a perfect scientific result," she says, "so I spent the next five years just living with it." She continued to dance, training in musical theatre, contemporary and jazz dance with Michelle Slater and Dana Jolly, and completed a Diploma of Musical Theatre at NIDA in Sydney.
Unfortunately, the pain got worse. "It was more evident about 18 months before surgery," Devon recalls. "I was a little bit less active, a bit less on top of it. My dancing was starting to show minor limitations, which was one of the big wake up calls. Then I was in America doing some acting and dance training over there, and a beautiful young girl from Perth who also has Scoliosis was trying to raise money to get a new type of surgery known as VBT (Vertebral Body Tethering). We saw all of her crowd funding and outreach, which led our research," she explains. Devon wasted no time getting an appointment with the leading specialists in New Jersey, and they took her through the procedure, which she was a perfect candidate for. "Then I chatted to the finance lady, and it was a very large amount of money," she says wryly. "My family were not in a position to pay that much, even as a loan to me, so I accepted it and went home. Of course my mum did not," she smiles, "and she continued to research and found Dr. Per Trobisch in Germany. The German healthcare system is different, and it was a lot more of an achievable goal. My family were then in a position that they could loan the money to me so that I didn’t have to go to a bank, which made a big difference," she says. Devon sent her information to Dr. Trobisch in September of 2017, and underwent surgery in January.
"It was a 10 hour surgery, or maybe a bit less," she says. "They deflated one of my lungs to get to the spine, and then they put screws into the vertebra, on both sides. On my thoracic spine they also did three disc releases where they reshape the disc so they can get a better correction. They put them back, and then they put a cord between all the screws to keep the tension, so the back can still move, but the spine is pulled back into place." Devon was determined to start moving as soon as possible. Only three days after surgery she was up and walking around, but she struggled with giving her body time to rest. "The recovery was not what I wanted it to be," she shakes her head. "I was doing really well in the hospital, up and walking, going up stairs, and down to the gym. The second day I went down to the physio’s gym, and I pushed myself way too hard. I was meant to come back and do some sessions after I left the hospital because we were staying nearby but they said no. At the time I thought it was really annoying," she laughs, "but now I know that what I needed to do was rest. Little things like it took me 20 minutes to get dressed and then I would have to take a break because I was so exhausted. And you don’t realise how much you lean back walking down a hill!" she smiles. "You just take for granted how much you can just sit up, bend forwards and back. Everything took more time than I anticipated and wanted it to, and accepting that was very hard," she admits.
Devon is now at a stage when she is in control of her recovery, and has been cleared by the surgeon and the physio to do whatever she wants – within reason. "I have to build up to everything," she says, "but I’m working really hard with my Pilates instructor. I’ve been back at dance class, which was really scary, I have to say, it was. I went to jazz technique class, and I hid at the back, like 'please don’t notice I’m here, I’m going to be so bad!' But that was a feeling that I created. No one in the room cared, the teacher didn’t care, it was in my own head. I actually went to the studio at Uni the other day, by myself, put on some music and just danced. Letting that feeling take over was so powerful and beautiful," she smiles. "But it has been a hard mental jump to go back into class. I can’t do the same jumps, leaps, rolls that I could do pre-surgery at only 10 weeks post surgery, but they will come back, and in the end I’ll be able to do those things better than before."
Devon's spine has seen a huge improvement since the surgery. Both curves measured at around 50 degrees before VBT. Now they're measuring 23 and 14 degrees. "The surgery isn’t to get a straight spine," Devon explains, "and if you want a straight spine then fusion is a better option. This is really to keep movement, and anything under 30 degrees is a manageable curve." With the surgical adjustments, Devon has grown about 3cm. "I've gone from 5'2" to an impressive 5'3"," she laughs. With a new way of moving to get used to, she is excited for the future, and is now studying a Bachelor of Fine Arts in Theatre at the Victorian College of the Arts. "I want to get back to where I was physically and mentally before surgery," she says. "I’m excited to be in my hard-hitting Broadway jazz classes and feel like I’m doing my thing, and making myself proud in what I’m doing. I want to create and choreograph more on myself and others, and really bring what I’m learning at university to dance. I think there’s a lot that we teach actors, singers and dancers separately and forget to unite those ideas to how we create, which is important."
As someone who has overcome a lot of the challenges that life has thrown at her, Devon has some final advice for dancers dealing with Scoliosis or any other obstacle in life. "I think if you’re in a situation where you can’t move forwards with your dancing or anything else, that looking after your mental health, staying positive and not forgetting why you want what you want, is really important. I had a book in hospital where I wrote down every day how I felt, and all of the positive things I had achieved that day, even if it was just eating all of my lunch!" she laughs. "I’m happy to chat to anyone and share my experience, whether they have Scoliosis or not, it’s important to me. I guess with any pathway in life that someone tells you has to be a certain way, I think asking why is very important. Figure out what’s best for you and what brings you happiness."