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What can parents do to help manage brace-wearing youngsters’ anger and outbursts?

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Fighting scoliosis is a team effort. It is also a long, difficult and sometimes exhausting battle in which the patient, who is in the front line of course, is ably supported by various team members: a specialist doctor, a physiotherapist, an orthopaedic technician and, if necessary, a psychologist.

Nevertheless, the people best placed to support patients are the members of their own family. Parents, who directly experience the everyday problems faced by their child, can play an active and crucial role in ensuring that the treatment runs smoothly.  

I would go so far as to say that their input is essential in order for the treatment even to begin.

A diagnosis of scoliosis always comes as a shock, and the course of action prescribed by the doctor is something no adolescent wants to hear. While they initially have little problem accepting the specific exercises they have to do, the prospect of wearing a brace is frightening. All they can think is that this is going to change everything, and they really don’t want that to happen!

In this situation, it is already clear that parents can play a crucial role. With their child probably completely overwrought, they need to inject a dose of rationality.

We, as a team of specialists, always try to address patients directly, striving, from the very outset, to involve them in every decision. We provide exhaustive explanations, as these are tools for interpreting and, above all, understanding the course that has been decided and prescribed.

However, on leaving our office or clinic, patients will inevitably take things out on their parents, and it will be up to them to find the best way of getting our words, and our message, across.

If you are reading this, you probably already appreciate that, in times of difficulty, we often find we have unexpected resources, and that, most of the time, it is possible to find a balance and follow doctor’s instructions properly. 

As with all long undertakings, however, obstacles are always just around the corner, and you need to have the strength to stay “on track”.  

Anger is a common and normal reaction in these patients, stemming from an understandable sense of injustice over the challenge they are facing.

In this circumstance, too, the whole team, but the parents primarily, must be ready to spring into action.

How can a parent best manage a child who is in difficulty with the treatment and gripped by a feeling of anger?

The first thing is to show empathy and understanding, remembering that things that are less important to us adults are not always viewed the same way by adolescents.
It is also important to remember that anger is a manifestation of distress, which can have various causes.

Parents must strive to be a point of reference and a channel through which their child can vent his or her feelings, in order to help him/her recognise and correctly express the anger he/she is feeling in the face of this difficult situation. The next step is to help the child to reason more clearly, reminding him/her of all the challenges he/she has thus far faced and overcome.

Parents must also be the first to believe in the course of treatment, and must continue to support it right through to its conclusion, having full confidence in the doctor and helping the child appreciate the importance of persevering. For these patients, this is perhaps the first time in their life that they have had to deal with a personal problem.

If they can learn to manage their anger and accept a compromise between what they want and what they can have (within the constraints of the treatment of course), then they will have learned, first hand, that, with a little patience and the support of those closest to you, difficult situations can always be overcome.

Note

This is one of the posts published in the Isico blog, www.scoliosi.org,  a dedicated space where patients can ask questions and swap experiences, but it is also a place where those involved in treating scoliosis can take a more in-depth look at a series of topics and also engage with patients.

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Scoliosis: dance and swimming. Yes or no?

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Is there any particular sport, rather than others, that individuals with scoliosis should choose? 

Two Isico studies have addressed this question, and in so doing they have dispelled the misconception that dance and swimming have a negative impact on scoliosis curves.

The studies in question will be presented in Melbourne, Australia, at the next SOSORT meeting, this year being held from April 27th to May 1st, 2020, during Spine Week.
As their titles show, these studies — Is swimming helpful or harmful in adolescents with idiopathic scoliosis? and The effect of dance on idiopathic scoliosis progression in adolescents — explore the relationship between scoliosis and two types of physical activity: swimming and dance. 

Swimming and scoliosis

A few years ago, a previous Isico study, Swimming and spinal deformities: a cross-sectional study, exploded another myth.
It showed that swimming has no therapeutic benefit; in fact, the swimmers presented greater asymmetry and hyperkyphosis than the individuals who did not swim.
On this basis, it was concluded that swimming has a negative impact on posture and consequently is not an effective form of prevention. 

The aim of our latest study on swimming was to verify the safety of recreational versus competitive swimming in adolescents with idiopathic scoliosis. 

Of 780 patients fulfilling the inclusion criteria, 529 (68%, 420 females, age 12.3 ± 1.3, 16.0 ± 3.6 Cobb degrees) regularly performed sports activities. 63 (12%) were swimmers, and 15 of these were competitive swimmers. 

“Compared with our 2013 study, in this latest research we did not consider healthy subjects” says Alessandra Negrini, Isico physiotherapist.
“We studied a sample of subjects with mild scoliosis (10-25°, mean Cobb angle 16°), not being treated with braces, and therefore only a clinical population. Our aim was to evaluate, on the basis of radiological findings at 12 months, the effect of swimming in individuals who already have a diagnosis of scoliosis and are going through a growth spurt (Risser-0-2, over 10 years of age). The effect of swimming was found to be comparable to that of other sports, and it was also similar in the competitive and the non-competitive swimmers. Age and hump size were the only factors found to influence the risk of worsening. These findings show that there is no reason to demonise swimming, be it recreational or competitive”.
In other words, they show that swimming is no better or worse than other sports.

Dance and scoliosis

Many spine specialists advise their idiopathic scoliosis (IS) patients to stop dancing on account of the risks (increased spinal mobility and flat back) that are potentially associated with the movements typically involved in this form of physical activity.
“The current literature reports a higher prevalence of scoliosis in subjects who practice dance than in their peers who do not dance” says Michele Romano, director of physiotherapy at Isico. ”In this research, we set out to assess the impact, in terms of the progression of idiopathic scoliosis, of dance compared with other sports in a group of adolescents (545 consecutive scoliosis patients)”.

The patients were divided into two groups: a Sport Activity group (SA – 461 participants), whose members performed any kind of sport, and a group of dancers, the Dance Activity group (DA – 84 patients).

“According to the results, the dancers showed a similar risk of progression as the patients performing other types of sport” Romano concluded. “The small sample size is one limit of the study; larger studies are needed in order to verify the effect of practising dance”.

Scoliosis: there is no particular sport that is more recommended than others 

So, what conclusions can be drawn from the two studies? According to the two Isico specialists, at present there is no evidence to suggest that any particular sport should be preferred over others, or that there is any sport that people with scoliosis should avoid.
Given that neither swimming nor dance, two of the activities most often discouraged for those affected by scoliosis, showed negative effects when compared with other sports, it seems unlikely that other types of sport might have a negative impact.
“The scientific evidence tells us that sport is good for us, and while it may not constitute a treatment as such (unlike specific exercises), it may have a positive effect, supporting the improvements recorded by those with scoliosis” says Alessandra Negrini, “as already shown by my study Effect of sport activity added to full-time bracing in 785 Risser 0-2 adolescents with high degree idiopathic scoliosis (which won the Sosort Award 2019). We at Isico have always believed that it is crucial for our patients to carry on doing sport, especially since their treatment can already be an uphill battle for them. In short, being able to carry on doing sport, something many of these youngsters are passionate about, can make it easier for them to accept the treatment.»

Back pain and scoliosis

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What causes back pain? Well, having a back and two legs to begin with! That’s right! As humans, we have one particular body part that is always going to be more exposed than the others to the risk of discomfort and overloading. And that body part is the spine.

You have probably sometimes wondered why certain people who do heavy jobs and spend their entire lives “mistreating their spine” don’t even know what it means to have back pain.

It is well established that “good” or “bad” loading of the spine is a result of its conformation in the sagittal (lateral) plane, in other words, on the distribution of its curves.
Unfortunately, the lateral profile of the spine, meaning the particular way in which the spine’s natural curves, called lordosis and kyphosis, are distributed, does not depend on the will of the individual, but on a genetic predisposition to one pattern or another.

Basically, whether or not we are predisposed to back problems is a matter of luck.

So, what should we do? Simply resign ourselves to the fact that, morphologically speaking, we are among the less fortunate? Simply accept that we are prone to back pain and put up with it, since there’s nothing that can be done?

No, absolutely not! Because back pain, affecting our work, mood and social activities, can really condition our lives!

Things to know

– You have to take care of your back because, for better or worse, it’s yours and it’s the only one you’re ever going to have.

– Taking care of your back means keeping it fit and knowing how to use it properly. So, make sure you do regular physical activity to keep your spinal muscles in shape, but also your leg and arm muscles. What kind of activity? There’s no “best” kind of physical activity; the important thing is to choose something you enjoy and do it at least twice a week, or better still three times. 

– Knowing how to use your back means making sure that you do not spend too long sitting down. You need to alternate sitting with spells of movement. Also learn to sit correctly, and if your work means you have to spend hours sitting at a desk, look at how to set everything (computer, seat, etc.) at the right height. Also, you need to think about how to correctly manage your body under stress, in other words when it is subjected to loads and also during physical effort.

– It is important to learn about the shape of your own spine and how forces are distributed over the body, and then to assess your particular limits and strengths. It can be helpful to do all this with the support of a specialist who can help to familiarise you with your own specific ergonomic and training needs.

What if I have scoliosis?

Even though there is still a lot to be discovered and learned in this field, we know that scoliosis, as it progresses, creates an abnormal alignment of the vertebrae, which is seen both in the frontal plane (as scoliotic curves) and in the sagittal plane (as changes in physiological lordosis and kyphosis).

Indeed, treatment of scoliosis aims to curb this progression and remodel the spine so that, by the time the individual finishes growing, it is as well aligned as possible.

According to scientific studies, if we can achieve good spinal balance in the sagittal plane (in particular, this means maintaining good lumbar lordosis), and if we can keep the scoliotic curves under 25-30°, the scoliosis outcome will not affect the proper functioning of the spine.

In such cases, the risk of back pain will be the same as that seen in people without scoliosis.

In the presence of more severe curves, it is necessary to be even more aware of the need to safeguard the spine. In the knowledge that it is a delicate and vulnerable part of the body, you must take good care of it and do physical activity to keep your back fit.

Dr Donzelli at Oxford University

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Dr Sabrina Donzelli, an Isico physician, participated some weeks ago in a joint programme in collaboration with the Centre for Evidence-Based Medicine in Oxford, together with other 15 students coming from Egypt, Brasil, Ireland, UK, USA, Ghana, Canada, Hong Kong, Malaysia, Lebano and Italia.

The topic of this demanding course was basic and advanced statistical methods for meta-analysis for health professionals designed to provide an overview of different meta-analysis methods and common problems encountered with extracting data. The module is part of the MSc degree in Medical Statistic provided by the department in  Evidence Based Health Care at Oxford University, Dr. Donzelli was admitted to the program in the Academic year 2019. 

Dr Donzelli is currently a teaching assistant for the online program in Principle and Practice in Clinical Research provided by the Harvard University gathering every year more than 400 students from all around the world.

Isis Navarro at Isico headquarter

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Could you tell us about your studies?

I am a PhD Student at Universidade Federal do Rio Grande do Sul. Since 2017, after I completed the SEAS course, I started to have only patients with scoliosis and work just with these patients. In my master’s degree I studied the surface topography as a possibility of easy and three-dimensional tool to evaluate scoliotic patients. I had some publications based on this primary subject.

https://www.sciencedirect.com/science/article/abs/pii/S0966636218303126

http://www.fortunejournals.com/articles/thoracic-idiopathic-scoliosis-establishing-the-diagnostic-accuracy-and-reference-values-of-surface-topography.html

And I have also some articles accepted for publication:

NAVARRO, ISIS J.R.L.; CANDOTTI, CLÁUDIA T. ; FURLANETTO, TÁSSIA S. ; DUTRA, V. H. ; AMARAL, M. A. ; LOSS, JEFFERSON F. . Validation of a mathematical procedure for the cobb angle assessment based on photogrammetry. Journal of Chiropractic Medicine (Print), 2019.

NAVARRO, I. J. R. L.; CANDOTTI, CLÁUDIA T. ; AMARAL, M. A. ; DUTRA, V. H. ; Gelain, G. ; LOSS, JEFFERSON F. . Validation of the measurement of the angle of trunk rotation in photogrammetry. JOURNAL OF MANIPULATIVE AND PHYSIOLOGICAL THERAPEUTICS, 2019.

What is your profession?

I am a physiotherapist.

Why did you register for the SEAS  course?

I was looking for the SEAS course, and my plan was to travel to Italy to attend the course, but fortunately Michele and Alessandra came to Brazil to teach for the first group in Brazil. I discovered the SEAS approach doing lots of researches on internet, searching for consistent methods of treatment to scoliotic patients to offer to them the best possibility of treatment and results.

What makes the SEAS learning course different from other educational courses and programs?

The more significant advantage of the SEAS course is the clarity of the reasoning behind the technic and the facility to apply what you learned. The SEAS approach allows doing physiotherapy with all type of scoliotic patients, independent of the type or classification of the curve. The teachers were always ready to answer all the questions and help with difficult cases I asked separately.

Are you satisfied with what you have learned? 

Yes. But when you start to practice more and more always news doubts arise. 

If you were asked to recommend the course, what would you say?

The SEAS course is an excellent way to understand the world of scoliosis, its characteristics and the reasoning to treat adequately and accurately. After the course, you will be able to evaluate and treat scoliotic patients based on a method easy to understand and to apply with a high level of scientific evidence.

Friends and bracing

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Adolescence and bracing are two challenges that can be difficult to face simultaneously. And, 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, and it is these that make this a period in which 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 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 takes some doing. 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. “coming clean” 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 to have a healthy back!


Living “In self-correction”. Is it possible?

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First of all, what is self-correction?

Kids who have scoliosis and perform SEAS exercises regularly know well what it is.
Scoliosis modifies the physiological position of the column and causes a deformity in the three planes of space.

Seen from behind, there is that curve that is easily recognizable in radiographies: the spine, instead of being straight, bends to the side.

Seen in profile, the curves that are normally present (lumbar lordosis, dorsal kyphosis, cervical lordosis) and which guarantee elasticity and the ability to absorb the recoils, are modified, often diminishing: those who have scoliosis usually seem more straight than the other kids. Finally, seen from above, the column rotates on itself, making the so-called “hump” come out, which is nothing but a part of the ribs or back muscles that move backwards to the side. Practically back, while bending sideways, twists. All these changes result in a loss of height.

Self-correction is a correction of all these anomalies. The goal is to take back the spine where it should be if there was no scoliosis, in a physiological position.

Self-correction allows the patient to achieve greater symmetry and a more well-balanced back in the sagittal plane. 
Acquiring the technique from the outset and applying it as often as possible in daily life should be the goal. 

The movements that make up the self-correction have strange names: translation… derotation… kyphotisation… antigravity support…

At the beginning, performing them is as difficult as pronouncing them. Still, starting with a good awareness of your body and your deformity in space, you gradually become confident, and kids manage to “unroll” their column by straightening it in a few tenths of a second.

It is the self-correction that makes every single scoliosis-specific exercise effective, because without it every exercise would be devoid of the therapeutic purpose, thus becoming a simple sport exercise.

The difficult thing for physiotherapists is not so much choosing the most suitable exercises, but the best self-correction for that particular kid in that moment of his growth and his therapy. Unfortunately, a poorly chosen, poorly adapted, poorly performed self-correction, could even make the exercises harmful.

As soon as kids learn how to perform their self-correction in the exercises, the therapist begins to ask them something that seems difficult to achieve: maintaining this correction in everyday life.

The first step is to do it here and there during the day: it is suggested to remember it for example at the sound of the bell at school, in the elevator, walking… Slowly, one is simply asked never to relax completely, until he accomplishes to live in self-correction.

But… is it possible?

Many kids confirm that it is possible, so much so that towards the end of the therapy many say: “Relaxing on the side of the curve annoys me, I don’t feel right on that side…”.

At this point, the most important goal of the therapy has been achieved, and the back of these kids will remain stable, without the risk of starting to bend again during adulthood.

The pubertal growth spurt: why is it the main risk for scoliosis?

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Scoliosis is known to be a condition that evolves with growth, the latter being a process that starts on the day we are born and ends when we achieve complete bone maturation (that is to say, at between 16 and 18 years of age, depending on our sex as well as various other subjective factors).
Over this long period of time, however, there are some phases in which the rate of growth speeds up, and these are the times when scoliosis is most at risk of worsening.

One of these phases is the “pubertal growth spurt”, a period of marked and rapid physical transformation that starts with the onset of puberty.

In females, the pubertal growth spurt usually starts at the age of around 11-12 years, as opposed to 13-14 years in males.

In this phase, their growth surges, even to the point of becoming twice as fast as before: whereas youngsters grow at a rate of 5-6 cm each year prior to puberty, during the pubertal growth spurt, they can grow by as much as 10-12 cm per year.

The main difference between these two phases is that prepubertal growth mainly involves the lower limbs, whereas in puberty the extra centimetres gained in height are almost entirely attributable to trunk growth. Therefore, in individuals who already have trunk asymmetries or mild curves, this period demands the utmost vigilance, as the situation can worsen very rapidly.

It is worth pointing out that we are talking about young adolescents, who look after their own personal hygiene and will often tend to close the bathroom or bedroom door when they are showering or getting dressed.
This means that parents, however attentive, may only get the chance to really observe their kids’ backs in the summer months, when they are at the sea or swimming pool.
This explains why, in many cases, changes aren’t spotted until months after they have occurred and the scoliosis has already got worse.

The pubertal growth spurt is thus the most dangerous period of growth for those affected by adolescent scoliosis; in early-onset forms (infantile and juvenile scoliosis) it is also necessary to be highly vigilant in the periods 0-3 and 7-8 years, respectively, as these, too, are periods of rapid growth.

In any case, our advice is always to have a paediatrician or family doctor check a child’s back before the start of these rapid growth phases, in order to allow, if necessary, a timely referral to a spine specialist.
If there is already a family history of scoliosis it is recommended to have the youngster checked directly by a spine specialist every 3-4 months.

World Master 2020: let’s go!

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On January 16 the World Master Online officially opened, now in its fifth edition. Participants come from all over the world with the entry of countries like Colombia, Armenia, Norway, Egypt and Mongolia for the first time.
It is the only online International Master that offers the possibility of training on the Rehabilitation Treatment of Scoliosis.
Over the years there have been over 200 participants, coming from 50 countries for 5 continents.
The Online course does not stop growing, so much so that one of the ideas in the pipeline is to expand the editions, starting to work alongside the English one in Chinese, as we have been asked several times.
What do they say about the Master? “I recommend the experts interested in Scoliosis conservative treatment join this course“. And also “The content is extensive, up to date and evidenced-based. This course gives clinicians a profound understanding of scoliosis and non-surgical management”.

For more info please visit the website: www.scoliosismaster.org

Scoliosis and pregnancy: it’s possible!

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The Isico blog www.scoliosi.org is a dedicated space where patients can ask questions and swap experiences, but it is also a place where those involved in treating scoliosis can take a more in-depth look at a series of topics and also engage with patients.

Here is one of our published posts

“I have scoliosis, can I have children?” This is a question we are often asked. And we have no hesitation in answering: “Yes, becoming a mother is a great joy that should be experienced without anxiety, even if you have scoliosis”.

It is, in fact, absolutely untrue that if you have scoliosis you can’t have children. A woman with scoliosis can have children. She should simply consult a spine specialist for advice and monitoring of her curve. 

Moreover, just like any other woman, she can, on the basis of specialist advice from a gynaecologist/obstetrician, opt for a natural delivery or a C-section. 

During pregnancy the body produces a hormone, called relaxin, which serves to “soften” the back and the pelvis, allowing the physiological changes that are necessary for giving birth.

During pregnancy itself, there will be no particular problems, as the expanding uterus supports the column and helps to stabilise it. 

After childbirth, however, the back remains very mobile for a few months, and this is the period in which there is an increased risk of a worsening of the curve, not least because the child, no longer supporting his mother’s back from within, will often be in her arms, placing an added strain on her back.
If the scoliosis is severe, it is a good idea to “plan ahead” and take some preventive measures: by working out an appropriate exercise plan before pregnancy, and continuing to do the exercises right up to the birth, it is possible to prepare effectively for the critical postnatal period when, moreover, the mother will probably have less time for doing exercises!

As for the birth itself, epidural anaesthesia may be well possible.
It depends mainly on whether the woman has had spinal fusion surgery, and, if so, on which part of the spine: if the surgery was performed at the level of the dorsal spine and the lumbar spine is free, then there will be no problem. 
If, instead, the lumbarlevel was also involved in the surgery, the anaesthesiologist will establish which was the last vertebra involved and, on this basis, decide whether or not an epidural is possible.