45 degrees
How can we design a space purely responding to the specific needs of scoliosis rehabilitation?
Female, 19-24y, Batchelor’s Degree, UK
In your personal experience what were the main physical and emotional struggles you experienced while wearing a back brace?
It was physically inconvenient finding clothes to fit over the brace, particularly trousers and had to arrange with school to not tuck in shirt. The brace was always visible to some extent, which I was quite conscious about, so always wanted it covered, but this was challenging in summer when the brace was hot in itself without adding additional layers to hide it.
How did you find the process of preparing for surgery and recovery afterwards? Please describe your experience.
For the first surgery I didn't want to know anything and tried to ignore the fact that it was happening. The surgery date was given at short notice, so I didn't have long to prepare. Recovery I found was frustrating as I was recovering through the summer holidays so couldn't join in with my friends. The second time round I felt relatively prepared as I knew a lot more about the surgery and scoliosis in general. However I was unaware until just before the surgery of the true extent of what they were intending to do. Recovery was still frustrating as again it was over the summer holidays but due to starting university after that summer I felt that I needed to have moving to university as an aim for my recovery.
How much time did you spend in the hospital after surgery until you were ready to go home? How long did recovery at home take until you were ready to go back to school?
First time round I was in hospital for two weeks due to the surgery being in two stages with a week complete bed rest in between. Started back at school gradually over the months between summer and Christmas. Second time was one week in the hospital and starting university approximately two months later.
How many degrees you had before and have now? Has it improved or worsen over time with chosen treatment?
At the start my curve was around 70 degrees. After first surgery I had a 20 degree curve lower spine and now it is fairly straight. All improved with surgery.
How do you think the process of treatment and general information about Scoliosis could be improved?
Clearer information on scoliosis specialists, which could carry out the treatment rather than just tell you about it, would have been beneficial.
Do you think being offered the chance to talk to an unbiased third party would have helped?
It did help when deciding on my second surgery just to talk things through with someone.
Do you think more needs to be done in today's society to help children and their parents emotionally cope with Scoliosis?
Yes, there needs to be clearer sign posting to organisations which can offer information and support. Needs to be greater awareness of the condition especially within schools.
Do you feel that there aren't any specific Scoliosis treatment centres that would join all treatment options in one place and wouldn't feel as a cold hospital?
I have only been for treatment within a hospital, wouldn't know of any other centres. Other centres could be good but I think it really depends on the service and support given rather than the location.
In your opinion what activities and facilities should a rehabilitation centre for teens with scoliosis include?
Opportunities to meet others and make friends. Activities to do to reduce boredom. Areas friends and families can visit. Places that can be used as aims to walk to, to build up distances walked, there could be milestones along the way with enjoyable features.
Dr. Saniukas, Surgeon and specialist in scoliosis, Lithuania
This is the specialist I was seeing from the start of my own scoliosis, during Christmas break I went back home and visited him for consultation. Meanwhile, I had an x-ray done and did a quick interview with doctor Saniukas.
At what age are scoliosis surgeries done usually?
Adolescent scoliosis, which appears without known reason, is usually operated at ages 12-13 when is the biggest progression of the curve. It really is more related not to the age, but how many degrees curve you have and we start to operate children above 45 degrees. My youngest patient that underwent surgery was 1 year old with an inherited scoliosis and the oldest patient that I operated was 43 year old.
How long does the surgery take and what needs to be done to prepare for the surgery physically and emotionally?
Surgery takes 6-8h and to prepare for it a patient has to be healthy and exercise to maintain good muscles. As the patient has to be laying down on the stomach through the surgery it's really important that lungs are in best condition, so breathing exercises are advisable beforehand. I think emotionally it is hard to prepare they have to be not afraid and agree to this. I don't know how they do it, I would be scared. (Laughs)
What is recovery time and process after surgery?
Recovery process is like that:
In recent years patients start walking and stand up on a third day after surgery. After seven days they leave the hospital and go home. A month or two depending on the case they spent at home, then a patient can go back to school, but his physical activities should be limited. In it advised to continue exercising with special routines and swimming is really good afterwards.
Do you think there should be not only physical treatment for scoliosis, but also a psychological to cope with emotional issues that scoliosis affects in life?
Yes. I think psychological therapy should be in the first place. Scoliosis brings a lot of changes in teens life that should be not ignored, but discussed.
Do you advise your patients to have a follow up check-ups after their scoliosis progression has stopped and if so how often?
Yes. There should be definitely check-ups and monitoring after scoliosis has stopped, you never know what consequences it can bring if a person doesn't exercise or does sports that are not suitable for scoliosis. I advise my patients to have check-ups every 3-4 years.
In your opinion what are treatment centres and hospitals lacking these days?
I think first impressions are most important and the staff that greets patients should be very pleasant and nice, so that the patients would be confident that they are in great hands. Most importantly I think these facilities are lacking of moral understanding, there should be a place for family and friends to visit and stay, not be restricted by visiting hours.
Male, 24-35y, Batchelor’s Degree, UK
In your personal experience what were the main physical and emotional struggles you experienced while wearing a back brace?
It was very noticeable through my clothes, so I used to get teased a lot by other people at school. Most people knew that I had it but I found it really difficult telling people that didn't already know as I was worried that they would think I was a freak. Despite the fact that the teenage years are those in which you grow fastest, it's the worst possible time for someone to have to voluntarily keep something like that up for so long. After wearing it for 3 years it looked like I wasn't going to grow anymore, so I stopped wearing it for 6 weeks in which I had an attempt at a "normal" summer. By the end of these 6 weeks I had grown a number of inches, and my back was more curved than it had ever been.
I found that the three main discomforts of the brace were friction burns, heat exhaustion, and also the vests I had to wear under the brace would often bunch up and pinch my skin. I hated my brace with a passion.
How did you find the process of preparing for surgery and recovery afterwards? Please describe your experience.
Preparing for the surgery wasn't too difficult as I tried not to think about it too much. I got it done through the NHS, so there was a bit of a waiting list, which perhaps gave me more time to come to terms with it. Preparing for the recovery wasn't bad as I lived with my Dad at the time, who had also gone through spinal fusion twice, so I had peace of mind that he was there, which was all I really cared about.
How much time did you spend in the hospital after surgery until you were ready to go home? How long did recovery at home take until you were ready to go back to school/work?
My operation was two stage, and the two stages were a week apart. I was out of hospital just over two weeks after the second operation. So I was in hospital for a total of just under a month. It took me another seven months until I was allowed to go back to work again.
How many degrees you had before and have now? Has it improved or worsen over time with chosen treatment?
I can't remember how many degrees it was. But it was really bad. And now it's fine. I get back aches if I stand for too long, but I prefer that to the level of pain I was in before I had the operation.
How do you think the process of treatment and general information about Scoliosis could be improved?
Scoliosis is actually quite common, which I refused to believe when I was younger. I think that the condition should be taught about in schools, so that future kids placed in situations like I was don't feel so segregated for something so minor. I think the process of treatment in the UK is very good, this opinion is greatly strengthened by the people I met in hospital going through the same thing.
Do you think being offered the chance to talk to an unbiased third party would have helped?
Yes. I had to independently seek out advice. My surgeon was a great source of info but it would have been great to talk to some unbiased people about it.
Do you think more needs to be done in today's society to help children and their parents emotionally cope with Scoliosis?
Yes. Perhaps because mine was so bad I'm an exceptional case, but I went through hell with my back and felt really alone. In hindsight, it would have been so easy to provide me with reassurance and guidance, but there was no one to do it.
Do you feel that there aren't any specific Scoliosis treatment centres that would join all treatment options in one place and wouldn't feel as a cold hospital?
The environment I was in was very cold and old fashioned, something warm and comforting would have greatly improved my experience.
In your opinion what activities and facilities should a rehabilitation centre for teens with scoliosis include?
1,000,000 DVD's. Or maybe just Netflix. Killing time is key to keeping sane when recovery can be so long winded.
Female, 16-18, Batchelor’s, Australia
In your personal experience what were the main physical and emotional struggles you experienced while wearing a back brace?
Physically it was hard to find clothes to fit and bending to pick things up or tie shoelaces was a struggle. Emotionally sometimes I would feel insecure when girls noticed my brace underneath my clothes and I felt judged.
How did you find the process of preparing for surgery and recovery afterwards? Please describe your experience.
I was advised to get surgery, but didn’t go through with it.
How many degrees you had before and have now? Has it improved or worsen over time with chosen treatment?
When I was first diagnosed, primary curve was 36 degrees and secondary curve was 29 degrees. Now it is 55 degrees and 43 degrees second curve. It was initially stable in the first few years or so of bracing, but has worsened over time.
How do you think the process of treatment and general information about Scoliosis could be improved?
I think information could be disseminated through health or PE classes in school since most people are diagnosed during their school years. Treatment could be improved by making sure ALL treatment options are offered to the patient and letting them choose the one they are most comfortable/suitable for.
Do you think being offered the chance to talk to an unbiased third party would have helped?
Yes. I pretty much had to face scoliosis on my own and I feel like having a third party there purely offering non-medical support would have really helped.
Do you think more needs to be done in today's society to help children and their parents emotionally cope with Scoliosis?
Yes! Scoliosis is so much more than a physical thing. It's linked to body security, fear of a worsening curve, ability to keep participating in sports/hobbies, etc. It affects so many aspects of a person's life, so there should be a focus on factors outside of the physical medical issues.
Do you feel that there aren't any specific Scoliosis treatment centres that would join all treatment options in one place and wouldn't feel as a cold hospital?
There is definitely a lack of such treatment centres. Only last year, 5 years after my diagnosis, did I find a centre which was specifically catered to scoliosis treatment through physiotherapy called the Schroth Method. It is a very welcoming centre with great support however it offers only the one treatment.
In your opinion what activities and facilities should a rehabilitation centre for teens with scoliosis include?
Chairs, which are actually not painful to sit in would be nice! So many chairs have been uncomfortable or downright painful to sit in with scoliosis. There should be rooms for teens to take a break from treatment, information brochures and books on scoliosis, maybe also a website for patients to anonymously discuss their scoliosis journeys.
Analysis
Through these interviews I learned different aspects of how scoliosis affects people. First of all, I interviewed a scoliosis specialist in Lithuania, which I have seen from the start when I was diagnosed with scoliosis. His medical knowledge gave me a good insight into what the process of surgery is and the usual recovery times. From the knowledge gained I can create a time schedule for my rehabilitation centre, stating how much time a patient would spend there.
From the three following interviews with people who went through scoliosis I learned a clearer view of how they felt about the process and treatment of scoliosis, which corresponds to my own experience. The three participants interviewed had very strong experiences about the back brace that they had to wear. They were conscious and insecure about the brace, also got teased in school because of the visibility of the back brace. Other difficulties they experienced with a back brace were: hard to find suitable clothes to hide the brace, especially when it's a hot summer; heat exhaustion; friction burns; difficulties to bend and tie shoes; breathing discomfort, as the brace would have to be really tightened up. Participants also found it hard to talk about scoliosis condition and tell people they are surrounded by every day. Therefore, only the closest friends and family members would know about it. That's why all three of them agreed that it would have been helpful to discuss their emotional struggles with an unbiased third party. From these interviews it can be recognised that a lot more information should be given to the patients about the treatment options available and who can carry them out. It was also noted that there is a lack of treatment centres as such. None were found that would be specifically designed for scoliosis patients and would involve different treatment options and recovery in a rehabilitation centre, instead of at home. From the second interview I found out that a person would choose the rehabilitation centre depending on the service and support given rather than location. That gives an understanding that the location could be anywhere and people would still go for the treatments available.
Furthermore, I asked the people that I interviewed what spaces and facilities should a scoliosis rehabilitation centre include, these were the main ideas:
- Space to meet other people with the same condition and talk to them.
- DVDs and activities to reduce boredom while recovering.
- Areas for friends and family to visit.
- Places that can be used as aims to walk to with enjoyable features on the way.
- Warm and comforting environment.
- Comfortable chairs and beds.
- Rooms to take a break from treatment.
These ideas give me a general understanding of what patients would expect in a rehabilitation centre for scoliosis.