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I have surgical scoliosis: should I have surgery or not?

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In the presence of a curve measuring more than 50 Cobb degrees, scoliosis is termed surgical; this is because there is a very high chance that it will worsen even in adulthood, causing pain, disability and reduced quality of life.

What should be done when surgical scoliosis occurs in infantile (0–3 years) or juvenile (3–12 years) cases? 
In the past, infantile and juvenile forms of scoliosis, being typically associated with a high potential for worsening, have always tended to be considered surgical cases regardless. There may be some hope of avoiding surgery, provided the affected individuals adhere to a lengthy period of conservative treatment. This will begin at the onset of the scoliosis and will continue until they have finished growing. Conservative treatment is often recommended in the early stages of scoliosis anyway, even when there is a very high likelihood that the patient will ultimately need surgery. In such cases, this treatment supports the patient until he/she reaches the best age and stage to undergo surgery, and it, therefore, helps to ensure that the surgical treatment will consist of a single and definitive operation.

What should be done when scoliosis is surgical in adolescence (from 10-14 years)?
At this age, the process of bone maturation is not yet complete, and therefore, scoliosis is at a high risk of worsening further. If the patient has never previously tried a valid conservative treatment programme (24-/23-hour bracing combined with specific exercises), then it might be worth trying this approach for a few months, after which, together with the medical specialist, the situation can be reassessed in light of the results obtained. We know that a scoliosis curve classed as surgical but still within 60° can be improved through conservative treatment and get below the surgical threshold in a certain number of cases. While this result cannot be guaranteed, it is worth trying to achieve it.
While this result cannot be guaranteed, it is worth trying to achieve it. It is a very long course of treatment that demands considerable commitment and many sacrifices, but it is essential to remember that it has a beginning and an end: sooner or later, patients are able to get rid of their brace! In any case, young patients and their parents must always be helped to make, as far as possible, an informed choice about the course they wish to follow. To this end, it is important to consider seeking a specialist surgical consultation (which is not the same as deciding to go on a waiting list for surgery!). The decision on whether or not to be treated surgically is a wholly personal one, but in order to make it, patients and families need to be informed of the risks and benefits of the operation; they must also be told about the most innovative surgical techniques available and the post-surgical recovery: how long it will take and what to expect. Given that it is impossible to know beforehand whether the benefits of surgery will be sufficient to justify performing it, only armed with all this information is it possible to make a truly informed decision.

What should be done in the case of surgical scoliosis at 17–20 years of age? 
This is the age at which, as bone maturity is reached, the risk of a growth-related worsening of scoliosis disappears. However, the condition may still worsen due to the instability of the curves. It is important to keep in mind that scoliosis surgery is never a life-saving procedure and therefore should never be treated as an emergency. It is always helpful to seek the opinion of a surgeon, but there is no reason, in this situation, why the patient should not choose to wait, taking the time to verify, through periodic checks with his/her medical specialist, the stability, or otherwise, of the situation. Should an evolution of the curve occur, it will still be possible to undertake a specific course of exercises and assess, over time, whether these are sufficient to stop the curve’s progression, before deciding whether or not to opt for surgery.

How should adults with surgical scoliosis be treated?
 In adults, the extent of the curve, measured in Cobb degrees, is no longer the main parameter when deciding whether to opt for surgery. When examining X-rays taken in adults, attention is paid mainly to the sagittal plane, given that adults (unlike youngsters) are more likely to develop a more forward-bent posture.
The other parameters to be considered are pain, disability and quality of life. Given that the surgery carries risks, and it is not possible to know in advance whether the benefits of the surgery will be great enough to justify choosing this course of action, in adults it tends to be chosen only in the presence of a highly debilitating level of pain that is seriously compromising the patient’s quality of life. In this case, too, it is possible first to undertake a specific conservative treatment, in order to monitor how, over time, it affects the stability of the curve and the level of pain and disability. In this way, the possibility of surgery can be weighed up in the light of its results.

Scoliosis: learning to love yourself and overcome your fears

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Many of our patients receive their scoliosis diagnosis in the midst of what is one of the most intense and turbulent periods in a person’s life, characterised by sudden and profound transformations that can even lead them to question and redefine their very identity. We are talking about adolescence.
During adolescence, the body changes, even quite abruptly, and these changes do not always give us the body we would like to have.
At the same time the sexual organs and secondary sexual characteristics are developing too, leading us to discover a new, previously unexplored, dimension of our body.
Cognitive development continues and sometimes peaks in adolescence. In other words, our cognitive functions gradually reach full maturity, albeit not all at the same rate. In fact, the different areas of our brain have different developmental trajectories and mature at different times. The frontal lobes are a particularly interesting area in this regard, as they constitute the neural substrate of what are termed executive functions, i.e., complex cognitive abilities such as the ability to plan, organise and regulate our behaviours.
Adolescence is also the period of life in which we experience an increasing range and intensity of emotions, but may struggle to regulate them if the brain area involved has not yet reached full maturity.
“Finally, our social relations are also an area of life that changes in adolescence,” explains ISICO psychologist Dr Irene Ferrario. “This is, of course, the period when friendships become increasingly meaningful and important to us, and in which, in some cases, we form our first romantic attachments. In short, it is a time when the demands placed on us by our social environment are becoming ever more complex.”
While all this is going on, some young girls and boys also find themselves having to handle and “digest” a diagnosis of scoliosis and the need to wear a brace, something that some patients find harder to do than others.
“One of the most common reactions in those struggling to accept their scoliosis and its consequences is anger towards a condition that, they feel, limits their freedom, that they perceive as unfair, and that makes them feel embarrassed, given that the brace can be seen under their clothes or felt when others hug them,” Dr Ferrario goes on.

Fear of what others might say or think is something we can experience at any age, although it is particularly frequent and acute in adolescence when we desperately desire to feel accepted by our peers, and to be like them. For some people, though, this fear can be paralysing, leading them to avoid all situations in which they might be exposed to the judgements of others. As a result, they limit their experiences, leading to even greater feelings of isolation and loneliness.
Sometimes it can be enough to talk these feelings over with friends or parents, or it may be sufficient, with the help of the doctor or physiotherapist, to find ways to manage the brace better.
Other times, patients can find it useful to talk with a psychologist about their feelings and the suffering a certain situation is causing them. Scoliosis treatment is a long and arduous process and it is quite normal to experience moments of difficulty due to tiredness or linked to changes in the patient’s life. Changing schools, changing friends, starting new relationships, arguments at home — all these are situations that can become moments of crisis that in turn impact the management of the treatment.
“The word crisis has negative connotations, but in actual fact this word came into being with a very different meaning” Dr Ferrario remarks. “It comes from a Greek word meaning choice or decision. In this light, a moment of crisis can be seen as an opportunity to make a choice that there is no escaping, whether you like it or not — an opportunity to redefine some aspects of yourself. Asking for help in a crisis is not a weakness. On the contrary, it takes courage to question yourself and decide to ask for help!”

At ISICO, it is sometimes families that ask to see the psychologist, and sometimes the doctors or physiotherapists suggest it, if they realise that a youngster is struggling, whether or not it is because of the treatment.
The intervention, at this point, may range from simple identification of the factors underlying the patient’s non-compliance to the structuring of a personalised support or psychotherapeutic pathway based on the youngster’s specific needs. The psychologist can also support doctors and therapists by helping them to understand and manage complex situations.
This collaboration between mental health professionals, doctors and physiotherapists allows us to take care of the whole person and not just their back.

A brace? Nothing to fear!

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Unfortunately, scoliosis has to be treated in adolescence, which is already a very tricky and delicate phase in which youngsters often feel torn between wanting to be independent and wanting to fit in and belong.
We have all been through it and know how difficult this period of growing up can be. It’s not easy being the parent of an adolescent either. Sometimes we struggle to understand our children’s problems as they seem so far removed from our own. We might also struggle because we would like to be able to solve all their problems for them. This particular challenge, though, is one they need to overcome by themselves. What we, as adults, can do is be supportive, helping them to think things through and analyse situations, being careful never to minimise their problems or difficulties. 
For adolescents, it is very important to feel part of a group, and so anything that makes them feel “different” is scary. Years ago, youngsters worried about wearing braces on their teeth for this very reason, whereas nowadays so many have orthodontic treatment that no one bats an eye.   

Friendships are also important for teenagers, who will open up to one another, sharing their problems, feelings, insecurities and worries. True friends are the ones who support their brace-wearing peer (helping them to accept the device as a part of their daily life), and certainly not those who mock or tease another person for a health problem.

Also, as we all know, whenever we have what we consider to be a defect or flaw, we tend to see it as a far bigger problem than it really is. If, for example, we have a pimple on our face, however tiny, we become convinced that it’s the only thing everyone else notices about us!
In the same way, for some patients, a brace peeping out from under a t-shirt is an absolute disaster!
Compared with the braces of the past, today’s ones are made to be almost invisible under a vest or shirt. This is partly thanks to the orthopaedic technician’s skill and expertise and the specialist doctor who chooses the model. 

Over the years, we have seen that our patients can do seemingly impossible things with their brace on. Just take a look at the photos and videos published on our website, www.concorsetto.it, where you can find patients offering tips on how to conceal a brace under clothes, and others who do dance shows, go to the mountains or seaside, or do sport in their brace (even athletics, skiing and gymnastics).
Seeing other brace-wearing youngsters who have accepted the need to treat their condition and managed to deal with the situation in a positive way helps to normalise the whole experience!  Indeed, the key, basically, is to try and focus not on the inconvenience of a brace, but rather on the fact that spinal disorders have to be treated in order to prevent problems from arising in adulthood. It’s far better to pour your energies into fighting your scoliosis, rather than your brace. While you can’t change your brace, you can change your perception of it and how you approach it! In some cases, a patient might find it useful to talk to an expert, such as a psychologist, in order to overcome any difficulties in accepting the treatment.

Recently, one young patient even sent us a photo showing the rock band Måneskin wearing corsets, which are not so different, in the end, from braces! Who knows, this could be the start of a new trend!
The last thing to remember is to take things step by step. Start by telling just a few close friends that you have started wearing a brace. That way, later on, with their help perhaps, you should find it easier to talk about it with others. Also, give yourself time to get used to it, as it is a whole new thing for you. In this way, slowly but surely, you will soon find you are getting on OK with your initially unwelcome new “friend”!

Why we at ISICO “talk in front of the children”: the importance of patient participation

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Although “talking in front of the children” is a deliberate “policy choice” on the part of our organisation, we are sometimes criticised for it in quality assessment questionnaires. Some parents, for various reasons, like to have a separate consultation with us, either before or after seeing the patient, but as doctors and therapists, this request always makes us uncomfortable. Let us explain why.

Scoliosis treatment, whether we are talking about boring exercises, a bulky brace, or even a delicate and risky surgical operation, is always invasive to some degree. Therefore it is crucial to ensure we have the patient’s conscious and willing participation. After all, exercises must be done actively and carefully, a brace must be worn, and kept tightly fastened, for many hours at a time, sometimes even round the clock, and the surgical option is invasive and painful and also has permanent consequences.

How many of us would be willing even to consider undertaking an invasive treatment without first understanding why we need it and what the implications are if we do (or don’t) go ahead with it, and above all without being sufficiently motivated? What’s more, with scoliosis, there is also another consideration.

Whenever scoliosis occurs, the worst stage is always during adolescence. This is the period in our life when our personality is formed and when, as individuals, we distinguish ourselves from our parents, who remain key figures in our lives but from whom, to a greater or lesser degree, we need to break away.

It is when the first parent-child conflicts arise, usually with the parent of the same sex, and sometimes with both. It is the moment we really discover our own body and the other sex, a period more or less marked by hormonal impulses.

Youngsters of this age will usually be very resistant to anything concerning them that is done or decided without their consent or involvement: in this particular case, we are talking about an aspect of their health, about their body (with which they may already have a tricky relationship, and what more personal and private aspect of life can there be than our body?), and about a treatment that always difficult and invasive to some degree.  

A further element in all this is the therapeutic alliance that is formed between the doctor and the patient, often with the mediation of parents, but never without involving the patient. If a doctor struggles to talk to the patient directly, perhaps looking the parents in the eyes and only covertly glancing at the patient, pretending to address the adults present, but really directing the conversation at an adolescent who is pretending not to hear, then the whole patient-doctor relationship, the crucial basis of any therapeutic alliance, will fail. And if this alliance cannot be formed, then nothing can be achieved.

In establishing the therapeutic alliance, it is necessary to set out the sacrifices involved, perhaps trying to sweeten the pill a little to reach the required agreement. And this agreement must be between two people: the doctor and the patient.

I, too, am a parent, and I well understand the importance we parents attach to our children’s wellbeing.
I would love to spare them life’s difficulties, but I know that the key thing, instead, is to prepare them to face them.

I know that the main thing is to ensure they find the right help so that they can face difficulties head-on rather than just endure them. Because what matters in life, even more than the result, is how we deal with things along the way: we all know that you can’t win all of the time, but if you give up before you even start, you will never win at all. Illness, especially one that occurs early on, when a young person is still growing, is undoubtedly a tough test, but, despite themselves, youngsters can find it becomes a formidable tool allowing them to grow with a balanced mindset, able to recognise the importance of external help and to find, deep inside themselves, the resources they need to cope with the treatment they need.

We, parents, are often the first to underestimate just how strong our children can be. We try to protect them, thinking we’re helping them, when our job is not to stand in for them but rather to make them independent, able to take flight by themselves and face any difficulties they may encounter. We need to be willing to let our children and teens amaze us, which means we must stop continually thinking that they are too small to understand (the Little Prince said the same thing!).

Secrets, above all, are to be avoided in this setting, and the patient will always interpret any private meetings between the doctor and the parents as “secrets” being discussed behind their backs.

And what about younger children? In scoliosis treatment, as in other settings, today’s children are tomorrow’s adolescents, and building a relationship with an adolescent should start in childhood. And we can assure you that children are just as attentive as teenagers are, even though their tranquillity and peace of mind will depend on their parents achieving and conveying the same.
Sometimes it is the children who would instead escape from the situation and leave their parents to gather all the information about the treatment they face. Still, such children tend to be already fearful, anxious and distressed, which makes it even more important to reassure them and involve them. Not in an aggressive or overbearing way, of course, but always bearing in mind and respecting their inner pain. And the parents’ role is crucial in all of this.

In short, there can be no going behind our young patients’ backs: to do so is wrong and counterproductive, as it undermines the relationship that must be formed with the person at the centre of the treatment: the patient. Talking openly demands care and sensitivity, and we always remember this and routinely show both to whoever seeks our help. We weigh our words carefully, especially considering the most delicate participant in our discussions: the patient.
Over the years, we have learned that a good patient can overcome the disadvantage of absent parents, whereas no parent, however good they are, can ever make up for the absence of the patient, who is the true and only protagonist of scoliosis treatment.

My brace has helped me to grow up!

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I’m Ilaria, and I have spent the past 6 years wearing a scoliosis brace.

At last, on 28/6/2021, after countless sacrifices, many, many moments when it felt like everything was against me, and others when things seemed to be going better, I finally came to the end of my “journey” with ISICO.

In spite of the difficulties I had along the way, as time went by my check-ups became increasingly encouraging, my back stabilised, and I was able to leave my brace off more and more; also, thanks to the exercises, the cosmetic appearance of my trunk improved.

There have obviously been lots of ups and downs over these years, but these have helped me to grow up: I now know that the low points teach you the importance of persevering, of keeping your head held high and always looking for the positive side of things.

Through wearing a brace, I have come to realise that I was a rather superficial person before. However, over time I have matured, and in fact, I learned to really appreciate the true value of situations and times spent both in and out of my brace.

My brace also helped me to appreciate what people really thought of me, and how much they cared about me.

When I first started wearing a brace, in the 4th year of primary school, my classmates and teachers didn’t know at all what it was for or understand why I needed to wear it. For them, there was no point to it, whereas I realised that it represented my “salvation”.
Luckily, over time and in my next school I came across people (classmates and teachers) who knew more about it and were always very supportive.

One very important factor in getting me to the point I’ve reached today was the “brace camp” holiday, organised by ISICO, that I had on the island of Asinara in Italy in 2018. There, I made some lasting friendships and learned that wearing a brace on holiday was no big deal, even if I could only leave it off for a few hours a day.

During that holiday, the physiotherapists taught us that doing postural exercises for our backs could actually be fun. They encouraged us and helped us to “put up” with keeping our braces on for the prescribed number of hours. What’s more, even though we weren’t able to spend very much time with our braces off, we were still able to enjoy the sea and the natural surroundings. They even taught us how to go in the water in a brace.

In the course of this whole experience, I have met many different people, with different stories, and this has helped me to see that while everyone at ISICO is on the same journey, each person experiences and approaches it in their own way.

I want to thank Dr Monia Lusini, who has always been a great support, whatever the circumstances, but my most heartfelt thanks go to my parents, who have always been there for me through thick and thin, supporting me and encouraging me not to give up and always to be proud of myself and persevere.

My parents are amazing, always ready to do anything for me and give me whatever I need.

Finally, I hope the things I have said might be of help to lots of other young brace wearers out there!

My message to them is: stay strong and stay brave because in the end all your sacrifices and hard work will pay off. Before you know it, you will be seeing the light at the end of the tunnel!

And don’t forget! Go in the sea as often as you like… just slip on your brace undershirt, brace and swimming costume and go for it! After all, there’s nothing quite like a refreshing dip ❤️

Friends and brace

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Adolescence and bracing are two challenges that can be difficult to face simultaneously. 

In our view, this is perfectly natural and understandable.

Adolescence is usually perceived as a difficult phase during which young people are still immature, tend to be irrational, and struggle to control their emotions. However, research studies focusing on the development of the adolescent brain have recently debunked these myths, allowing adolescence to be understood, from a more modern perspective, as a life stage characterised by numerous possibilities, great creativity, and a desire to experiment.

However, it is also a time of great changes, when youngsters are particularly vulnerable. Their increasing need for freedom and independence sees them looking outside their immediate family; accordingly, friends assume a more and more central role, becoming the basis and starting point for building their self-awareness and personal identity.

At this age, then, finding yourself faced with the prospect of wearing a rigid brace for up to 23/24 hours a day certainly isn’t easy.

A young person who has just been prescribed a brace can experience many different emotions, which vary from individual to individual: some will feel angry, others sad; some may be fearful or feel ashamed.

Shame is an emotion that stems from the fear that others will judge us. What are my friends going to say when they see me in a brace? What will they think if they find out I have scoliosis? 

In adolescence, precisely because this is a time when we are still working out who we are, we can be particularly sensitive to the opinions of others; we want to fit in, and we fear rejection. 

For these reasons, having to wear a brace can be seen as an obstacle to the formation of friendships and early romantic attachments. It becomes a secret to be kept strictly within the family. Some youngsters try to keep their brace hidden under their clothes and avoid physical contact with others, to the point of avoiding those activities in which their brace would have to be exposed, and thus depriving themselves of a whole series of experiences. 

In this way, they become victims of their own secret.

Hiding a brace requires a lot of effort. Is it really the best thing to do?

Even though hiding is a natural and automatic response when we feel ashamed, it is also the most harmful. Instead, the least natural and least automatic (i.e. “telling the truth” and showing yourself) is the most beneficial! When you find out that you have to wear a brace, the best thing to do is to tell your friends and classmates about it immediately. Although this might seem difficult, it is far easier than trying to keep the fact a secret. Start by telling your closest friends, and then gradually share the news with everyone else.

You really have nothing at all to be ashamed of. Quite the opposite: you should be proud of what you are doing in order to have a healthy back!

Authors: Irene Ferrario, psychologist and Antonella Napolitano, physiotherapist