Professor Adrian Gardner, Orthopaedic Spinal Surgeon, Royal Orthopaedic Hospital, Birmingham and Dr Emily Russell

Introduction (Adrian Gardner)

Adolescent idiopathic scoliosis (AIS) is a condition seen in teenagers and presents with asymmetry of the spine and chest, both to the back and the front of the body. When someone with AIS comes to see someone like me (a clinician to look after their AIS), I will talk to and examine that person and then look at their X-rays. The majority of the decisions around treatment are based on measurements taken from those X-rays and the Cobb angle is the main number that we all recognise.

However, we know that there is actually more to having scoliosis than what a doctor and the X-rays say about the shape of the spine. This represents how the individual feels about their back and their body shape, within their own life. In lots of ways, this matters more than what the X-rays show, but by its very nature, it is far more difficult to be able to quantify, analyse, and manage.

It is just worth at this stage noting that there is a difference between the definitions of psychology and the definitions of mental health. Psychology is defined as the scientific study of the human mind and its functions especially those affecting behaviour in a given context. Mental health is defined as a state of wellbeing in which an individual realises his or her own abilities and can cope with the normal stresses of life, can work productively, and is able to make a contribution to his or her community. Whilst these definitions are the true scientific definitions, the terms psychology and mental health do overlap significantly and for our needs can probably be used interchangeably.

So, it is important to recognise why psychology and mental health is important in AIS, and that is around the fact that AIS is not the spine. AIS is about a person whose spine is ‘wonky’ and has asymmetry of their back and that person comes with lots of other features that overlie and affect their own view of their spinal shape. This can be a long list and can include such things as relationships with their family and friends, fears and issues around school, clothing, pregnancy, sport, exams, future jobs, limitations in activity. There are then concerns about what treatment may involve, which may or may not be completely based in fact but could include concerns around paralysis, blindness, infection, stiffness, and pain. If a young person with AIS is going to get the best care, an understanding of them as a person, combined with all the above features and how they interact with that person’s view of their spine, is key.

Unfortunately, celebrity culture does not help in this sphere. As I am now ‘getting on a bit’, this is something I see from the outside. But I recognise the effects of social media and television shows that project a view of how people should be, look, behave. Programmes such as ‘Keeping up with the Kardashians’, ‘Love Island’ and ‘Made in Chelsea’, can give a false impression about what “normal life” actually entails. There are also a large number of social media channels which young people interact with regularly on a daily basis. All have the potential to affect a young person’s view the world. Certainly, there are reports on the negative effect of social media on the social identity of adolescents.

The other key thing around the understanding of a young person and their scoliosis, is that a young person comes with a family, and that family will bring its own fears and concerns along with their own understanding of scoliosis. That family unit may also need to deal with other children and what scoliosis might mean for them.

The academic literature highlights the potential negative effects on the psychology and mental health caused by their scoliosis on people. The science suggests clinically significant psychological and emotional distress in up to 32% of adolescents with idiopathic scoliosis.

My own work identified that, of a group awaiting surgery for scoliosis, 18% met the criteria for being depressed and 59% met the criteria for social anxiety. Other papers note 40% of young people with scoliosis experience psychological alterations in their quality of life. The major things that come through from all this work is that self-image and body shape, both a person’s own view of themselves and the view of others seeing them, are a major source of concern. Of interest, it is noted that poor mental health is not necessarily solved by surgery, suggesting that the size and shape of the scoliosis may well not correlate with the young person’s mental health, pre or post-surgery. Certainly, being a teenager is hard!

However, in saying all of that, I recognise that I am a consultant who treats scoliosis, but I have never had scoliosis. An understanding of the psychology of mental health with scoliosis in young people is best related by someone who has real life experience of what it is like to have scoliosis and have treatment. Consequently, what follows is written by Emily Russell, who has scoliosis and has had surgery and will give her perspective on the psychology and mental health challenges of AIS.

Personal History (Emily Russell)

I was 13 when I was first diagnosed with scoliosis.

Up until this point, I hadn’t been aware that there was anything “wrong” with me, and the news came as a bit of a shock to me and my parents. Having addressed my initial concerns (Is it dangerous? And do I have to stop dancing?), we went through the rather clinical process of X-rays, angle measurements, examinations, assessments of the degree of scoliosis and my “rib hump” before my very kind surgeon sat down and explained to me his recommendations. At this point, since I had two curves which were both under 40° and compensated for each other, the recommendation was not to have surgery but rather to watch and wait. If the curves progressed beyond 40° then a new discussion could happen.

So now I was 13 years old, very aware and rather well informed about how my body was different from “normal”. I also hadn’t had any intervention to fix this problem, and at the moment there wasn’t any intervention that was recommended. I also happened to go to an all-girls school, which I imagine didn’t help with my insecurity. A school friend referred to my back as “freaky” when we played leap-frog and my rib hump was visible. I started wearing baggy tops and jumpers to cover myself up.

Adolescence is a tricky time for most people, not made easier by an awareness of how you don’t fit in. Whilst I had a supportive group of friends with whom I could laugh and joke about my “wonky back”, outside this comfort zone, I lacked self-esteem. I remember one nurse (who was a complete stranger to me) making a comment to me about how I mustn’t slouch – I hadn’t been slouching at the time, and small comments like this stuck with me for much longer than they otherwise might have. I now recognise this sort of behaviour as a problem with the person rather than with me, but as a young woman it could make me feel quite upset. Regardless of this, I still made it through adolescence fairly successfully, and I’d like to think reasonably well-adjusted. It is perhaps interesting then, given that I had come to terms with my back in the absence of intervention, what happened to me after I had the surgery.

Once I was at university the back pain got worse. Initially I didn’t realise it was anything other than the back pains that everybody else gets, and I kept my head down and tried to work through it. It was only when I went to the GP for stronger painkillers that they recognised that my spinal curvature may have progressed and referred me on to a spinal surgeon. These curves were now over that magic number of 40°, and so surgery was recommended. I was advised that this was a cosmetic procedure, and it was not guaranteed to reduce my pain. The surgery was performed successfully, I was out of hospital in 8 days, and everything seems to be going perfectly. At this point I was in my third year of university.

However, 6 months down the line, some rather worrying symptoms started to appear. I was getting shooting pains into my feet that would wake me up in the middle of the night. I would regularly get pins and needles in my little and ring fingers of both hands. If I sat down for any length of time my feet and lower legs would go numb. Sometimes my arm would feel like it didn’t belong to me. Over a matter of months, the symptoms became worse, and much more frequent. I became increasingly anxious about these symptoms and mentioned them to my spinal surgeon at my next clinic follow-up.

Up to that point they had been preparing to discharge me from follow-up. However, with my new symptoms, and increasing concerns about spinal impingement (although they told me straight away this was incredibly unlikely this far down the line having had a very successful initial surgery) I ended up having CT and MRI scans which couldn’t find the problem. Increasingly anxious, I was referred to a neurologist. My neurologist was absolutely brilliant, and when I compare my experience of this condition to that of others, I am incredibly grateful for his confidence in his diagnosis, and the sensitivity with which he explained things to me.

The symptoms, in the presence of normal scans, examinations, and nerve studies, implied that there was nothing physically wrong with my brain, spine, or nerves. He then explained to me that I was experiencing somatisation.

It will not be a surprise to anyone when I say that emotions can change how the body functions physically.

When we are upset, our eyes spontaneously water. When we are anxious, our heart pounds and our hands become sweaty. These are well accepted by the general population as normal responses to emotion.

However, sometimes emotions can’t express themselves that way. This has become associated with an undeserved stigma, and the idea that it must be “all in your head” and that people must be making their symptoms up.

Essentially, after the surgery had happened, with my recovery going so well, I was very anxious to tune into my body to know early on if anything went wrong. Just as you had forgotten you had socks on until I reminded you of it here, my body hadn’t been telling me about occasional pins and needles until I started paying very close attention to when they happened. Every time I had a symptom that I could relate to my spine, I would pay attention to it, and focus on it, and so my brain would now automatically draw my attention to it where previously it had not done.

My neurologist was brave enough to suggest that if I acknowledged my symptoms when I experienced them, but then gave their presence no weight, they would go away. He also validated my experience of the symptoms, explaining that he understood that for me the symptoms were very real, even though there was no underlying nerve damage to explain them. He never made me feel like they were just in my head. Four months later I was completely better.

I have had other colleagues praise me on being so open about the fact I have experienced somatisation, which surprises me every time, because very many of us will have done, and this should not be stigmatised, I should not have to be brave to admit it. Many people experience headaches when they are stressed, or tummy pain that no one can explain when they are anxious. The problem with somatisation, is that it takes a very confident doctor to tell you that there is no organic underlying disease. As a result, many people have lots of investigations for their symptoms, many of which are invasive, without any cause being found.

Whilst the lack of a life-threatening cause should be good news, the hunt for an underlying diagnosis becomes forefront in the mind, and a source of anxiety for patients. When it then sounds like doctors are implying they are making their symptoms up, this is clearly then very frustrating and alienating.

The result of my personal experience with scoliosis, and how I feel it affected my mood and body image, means I am entirely in support of the suggestion that in order to holistically care for a teenager with scoliosis, there needs to be an appreciation of the potential for underlying impacts on mental health, and provision for support of this within orthopaedic clinics. Whilst all the surgeons I met were clearly brilliant men, I did not feel as a young woman able to ask them all the questions I had without feeling vulnerable: in particular, questions around body image, future pregnancy, and childbirth. This situation is becoming easier, and I know that support exists through my doctors, friends and family, colleagues, and support groups such as SAUK.

Conclusion (Adrian Gardner)

So, in conclusion young people who have scoliosis are more than just their X-ray. For them to have the best outcome, there is a need for good communication between the treating clinician and the individual with scoliosis, around all the things that aren’t seen on the X-ray but that matter to that person. It may well be that the help that is required is not via a spinal surgeon, and that others need to be involved. A holistic view has to be in the young person’s best interest.

Certainly, there is research that can be taken forward in the future and as researchers in the field of scoliosis, this is being considered. There is also work to be done normalising the differences in how people look. The work done by the charity ‘Changing Faces’ in normalising differences in people’s appearance has been ground-breaking. There is no reason why the same can’t be done for scoliosis.