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Alessia’s story: a champion who dances

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Alessia has dancing in her heart. For years she has been treated with a back brace and exercises due to a challenging scoliotic curve and her path has always been a struggling uphill ride, during which she never lost sight of her passion, dancing! 
She never stopped dancing, even wearing her corset and never gave up until recently she won the title of 5th Italian champion in the category of Modern/Contemporary dance at the 2022 Italian championships. Here are the words she wanted to share.
“My name is Alessia Mancini, and I am a dancer. At the age of 6, I was diagnosed with very important scoliosis: my curve was greater than 40 °. At the age of 11, I came to Isico, where I made my first visit with Dr Sabrina Donzelli, who followed me for the duration of my therapeutic path. After a few months, I was wearing the first corset of a long series. For two long years, it accompanied me for 23 hours a day; I wore it when sleeping, going to school and playing sports. The only hour of freedom available was dedicated to dancing.
Over the years, the wearing hours have decreased to 18 in the last six months of therapy: I was now 18 years old.
Therapy has accompanied me through the most complicated and changing years of my life, forcing me to sacrifice aspects of adolescence that were taken for granted by my peers.
All this without ever compromising the one thing I already understood, when I was only 11 years old, was essential for me: dancing. Although I could have felt inferior to my pathological condition, I always thought, on the contrary, that I had something more and that I was somehow special.
I had to work on many technical things subjectively compared to my fellow dancers since my body’s levers and balances are shifted compared to an “aligned” person! But now I thank the little girl that was me, who has always believed in this dream because thanks to her that I am today’s Alexia; she pushed me to get to where I am right now.
Finally, I would like to thank my doctor again, Sabrina Donzelli: she was and will be my doctor of life!”

Can scoliosis get worse while you are waiting for a brace?

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It may happen that between the prescription of a brace and its actual application, some time can elapse, may this be due to bureaucratic issues, issues linked to the orthopaedic shop or simply to personal reasons.

Considering that a brace is prescribed precisely to prevent scoliosis from getting any worse, it is legitimate to wonder what happens while you wait for it to be delivered. Could your scoliosis get worse?

Well, there’s really only one way to find out, which is to have another X-ray taken just before starting to wear your brace. At ISICO, our doctors always ask for a new X-ray whenever, for whatever reason, 3-4 months or more elapse between prescribing and fitting a brace. From these X-rays, we have seen that the condition remains substantially stable in some patients, whereas in others scoliosis worsens by a few degrees. 

Patients going through a growth spurt are at risk of their scoliosis worsening in the space of just a few weeks. 

There is another reason why it is a good idea to have an X-ray not long before receiving the brace: by comparing subsequent X-rays with previous ones, it is possible to assess the effectiveness of the treatment. 

Many specialists, for example, ask their patients to have an X-ray with their brace on quite soon after starting to wear it. By comparing this “brace-on” X-ray with the previous one, they are able to see how the device is working and evaluate how well the patient’s spine is responding to the correction.

So, what can be done to reduce the risk of your curve worsening while you are waiting for your brace to arrive? First of all, you can try and speed up, as far as possible, the bureaucratic process. It is also crucially important to start doing, straight away, your specific self-correction exercises, as these are able to slow down the progression of scoliosis.

Since, for some patients, timely intervention can be crucial in managing the condition, the specialist prescribing the brace will carefully explain what has to be done while waiting for it.

Green June: The tin man tale

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June is the month of scoliosis and during this #scoliosisawarenessmonth  we are sharing images, videos and testimonials on our social networks to remember the importance of it.
Today is the time for a story that years ago won our Concorsetto in 2019. A text written by a young patient, Leonardo Vener, entitled “The tin man”.
Below is an excerpt, you can read the full text on the site www.concorsetto.it

Tin Man (excerpt)

Leonardo Vener

“It was June when I started wearing a back brace. The day of the first fitting was a total disaster, although that’s the way I saw it. When I put it on and left the waiting room to try it out, I was struck by two kinds of pain. One was physical; it was clear that some adjustments were called for. The other was a different kind of pain. As I went outside, I caught sight of myself reflected in a window. For the first time, I saw myself in a brace. In the reflection, I looked different. And I mean different in a wrong way. After all, I liked the way I looked before. Staring at my image, I became aware of another change in myself: a tear raced down my cheek, chased by another, the second seeming to want to catch up with the first. After that, they came thick and fast, one after the other. A dreadful river of tears. Perhaps that was the first time I ever really cried with abandon, and I still feel somewhat ashamed of those wasted tears. Also, because I absolutely hate crying.

[…] Initially, wearing a brace wasn’t at all easy. First, I had to get used to doing everyday things in a new way. That’s not to say I was impeded, even though that’s what it felt like to begin with. The second problem was the heat because the summer two years ago was the hottest and stickiest I can ever remember. I really couldn’t stand being hot, and I was suffering even before the treatment started. Let’s say that it really doesn’t help to have a plastic brace hugging your back, not to mention that extra layer of fabric between your back and the brace, to prevent the plastic from sticking to the skin. It doesn’t help one bit!

Scoliosis is a bit like when a kid comes across a jigsaw puzzle on the floor: unexpected and catastrophic. Just as I was putting all the pieces together, and starting to see the complete picture, I suddenly found myself back at square one, only now I felt tired, which made it all the harder. I was so wrapped up in myself that I couldn’t see this new beginning as anything other than a drama and a tragedy, completely failing to realise that with puzzles, the challenge of putting them together is the fun part, not just completing them. Each piece is important, and finding exactly where it fits is like finding the key to life itself.

My brace quickly taught me that even the easy pieces of my life now needed to be reappraised and turned this way or that.

“It’s just a question of getting used to it, don’t worry”.

Up to a point, that’s true. In time, you do get used to doing up your shoes without bending over. You even find a way of picking up pencils that drop off your desk. You also get used to having to carefully plan your hours of freedom, when you can leave your brace off, to maximise that time and make the very most of it. The thing that’s hardest to get used to is the very idea of wearing one.

People can’t all be expected to see things in the same way. After all, we all look at things with our own eyes and process them with our own minds. Some manage to look to the future even in the midst of misfortune; others find that success can trigger fear. It’s like when an icy mantle envelops winter roads. Some people are nervous and fearful of slipping, whereas others just strap on their skates. Doctors belong to this second category — people who, when faced with a problem, will start to look for a possible solution.

In fact, as soon as they had my back X-rays in their hands, my doctors were already thinking about how to try and solve the problem, clinging to that one crumb of hope that, with incredible effort on my part, might turn out to be well placed. But, of course, it was up to me to seize that crumb. So, I decided to put on my skates and try out the ice. To begin with, the doctors skated alongside me, helping me along, before finally allowing me to strike out on my own. I am still skating today, even though I sometimes wobble a bit. Every so often, I look over my shoulder towards the exit, and feel tempted to give up and come off the ice. But I know that that’s not what I really want. I want to carry on wobbling until I can finally skate confidently, because once you have learned how, it’s like riding a bike — something you never forget how to do.

The first time I wore my brace in front of friends, especially my classmates, I felt very unsure. I didn’t know what to expect. I didn’t want them to see me differently somehow, because of this change in my appearance. “So, you’ve got it on then. How long have you got to wear it for? Do you have to keep it on all day? Does it hurt? …”

Well, they didn’t! Obviously, they were full of questions, and I just answered them, no problem. After that, I found that nothing had changed. Thanks to them, I realised that even with a piece of plastic around me, I am still Leo, the kid who laughs a lot, loves football, tries hard at school, thinks deeply about things. In short, I am still me! Lots of people lose touch with themselves when things happen to them. It’s easy to forget you are a good student when you get your first bad mark. When a relationship ends, you forget how happy and in love you were at the start of it. And sometimes, even knights in shining armour don’t feel so brave once they have saved their princess and are leading a normal life. But I haven’t forgotten anything about the way I was before, because simply erasing things isn’t always the way to start afresh. And I was starting afresh.

The start of my treatment was like a bump in the road of my life journey. And it took me unawares. As any driver knows, you need to slow down as you approach a bump. On the other hand, confused and angry, I pressed down on the accelerator, sacrificing some shock absorbers as a result! Looking back, I was probably going so fast that hitting the bump made me fly into the air, like a rally car off a ramp. In other words, I Iet go of reality, letting my imagination soar. But, of course, I had to come back down to earth again, which meant standing in front of a mirror and starting to do the exercises that the physiotherapist had prescribed. But that flight of fancy was what got me over that first bump, and as soon as I saw the next one ahead of me, I approached it in exactly the same way, and once again took flight. After that, with each bump it got better and better, and the crash down to earth less devastating. 

Every night I go to sleep looking up at the ceiling.

I stare at it, wanting it to fall in and let me look at the stars.  

I pray that tomorrow will be better than today has been, and that the sun will banish the last clouds.

I hope that the night time will cancel my fatigue, so that I can simply feel proud of myself.

I may be waiting to be grown up, so that I can put away my soft toys.

But in the meantime, I can smile and clean a bit of rust off my body.

Go for it, tin man! Tomorrow is another day”.

Dress green with us in June

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As every year, Isico dresses in green throughout June with a particular initiative. 
During the four weeks of the month, we will release dedicated posts on our social networks where each time we will share something different: a video, a testimony or an image to talk about scoliosis and how it is possible to live your daily life and overcome the difficulties of a demanding therapy.

Isico will be also part of an initiative organised by Tratando Escoliose/Brazil who realised together with the Associação Brasileira de Tratamento da Escoliose (ABTE), the First Scoliosis Event exclusively for patients and families.
Concerned about the quality of the information that reaches those who are in search of adequate scoliosis treatment for their kids, ABTE and “Tratando Escoliose” want to facilitate the meeting between national and international health professionals, renowned in the field of scoliosis, clearing doubts and insecurities.
Isico will be represented with a short video given by our physiotherapy director Michele Romano on the importance of patient education, through informative material, to better understand the how and why of treatment and the importance of a strong team following the path.
Follow us too, wear green and share our posts with the hashtag for the event ##scoliosisawarenessmonth

ISSLS 2022: Fabio Zaina’s take

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Finished SOSORT Meeting, ISICO physiatrist Fabio Zaina headed to Boston where the 48th ISSLS Annual Meeting, another international event that, following the hiatus due to the pandemic, could finally be staged in the normal way again.

Dr Zaina represented ISICO by giving a presentation which was one of the 8 selected for presentation to the general assembly at the ISSLS, the fourth in order of importance (in fact, the reports have been presented in order of choice of the scientific committee). Further to this great achievement, Dr Zaina also presented a poster.

We asked him three questions, to get his brief take on the event.

1) How did it feel to finally get together with so many colleagues from all over the world?

It felt absolutely great, because it is three years since the last time, and they have been difficult for everyone. Added to that, ISSLS is like a big family and the aim of its members is not just to do research, but to work together and nurture the good human relations that are essential if you want to produce quality scientific work.

2) What were the major scientific developments at this 48th Annual Meeting?

A number of the studies presented focused on type 1 and 2 Modic changes. Efforts were made to interpret this sign, which seems to be related to low back pain, and also to consider the possible causes, which might be mechanical, autoimmune or infectious. All this seems to suggest that although Modic 1 and 2 are two separate entities, there could exist intermediate and nuanced forms lying somewhere between the two.

3) In five lines, which would you say was the study of most relevance to your daily clinical and scientific work?  

I would say it was the AWARD-  winning “Progression of spinal degenerative changes in a group of chronic low back pain patients and patients 11-14 years after discography evaluation” by Swedish authors Hanna Hebelka, K. Lagerstrand, V. Gunterberg, and H. Brisby.
I say this because it threw into question the findings of a previous paper published in 2009, which took an ISSLS Prize that year, namely, “Does discography cause accelerated progression of degeneration changes in the lumbar disc: a ten-year matched cohort study“ reached the opposite conclusion to the previous study, which had found that discography techniques resulted in accelerated disc degeneration, disc herniation, loss of disc height and signal, and the development of reactive endplate changes compared with the findings in matched controls.

Even though the two study populations are not perfectly overlapping, the result is interesting and a starting point for further studies.

Isico’s research wins the SOSORT Award

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For the fourth consecutive year, Isico has obtained the most prestigious award for those involved in rehabilitative treatment of the spine, winning the SOSORT Award with the study Prediction of Future Curve Angle using Prior Visit Information in Previously Untreated Idiopathic Scoliosis: Natural History in Patients under 26 Years Old with Prior Radiographs.

The research, which involved 2317 patients with idiopathic scoliosis between 6 and 25 years old, was developed by our researchers (the Isico authors are Prof. Stefano Negrini, together with Dr Giulia Rebagliati, Dr Fabio Zaina, Dr Sabrina Donzelli and Dr Alberto Negrini) in collaboration with Dr Erik Parent of the University of Alberta, Canada. This project was funded by a Standard Research Grant from the Scoliosis Research Society.

“Understanding natural history helps inform the treatment selection for modifying the course of the disease or to avoid overtreatment – explains prof. Stefano Negrini, Isico Scientific Director- Previous models predicting curve progression lacked validation, did not include the full growth spectrum or included treated patients. Our aim was to develop and validate models to predict future curve angles using clinical data collected only at, or both at and prior to, an initial specialist consultation in idiopathic scoliosis”. 

Scoliosis-specific exercises are recommended in small curves in skeletally immature patients, exercises and progressively more aggressive brace treatments are recommended for moderate and severe curves in 10% of growing children and adolescents and invasive corrective surgery is recommended in severe curves at risk of continued progression in adulthood for 0.1-0.3% of cases. 

“Patients were previously untreated and provided at least one prior radiograph prospectively collected at first consult – continues prof. Negrini – We excluded those previously treated”.

 Radiographs were remeasured blinded to the predicted outcome: the maximum Cobb angle on the last radiograph while untreated. Linear mixed-effects models with random effects and maximum likelihood estimate were used to examine the effect of data from the oldest visit (age, sex, maximum Cobb angle, Risser, and curve type) and from other visits while untreated (Max Cobb angle), and time (from oldest radiograph to prediction) on the Cobb angle outcome.

“Predictions models were proposed which can help clinicians predict future curve severity expected in patients not receiving treatment –ends prof. Negrini – Predictions can inform treatment prescription or show families why no treatment is recommended. Our models offer the flexibility to predict at a future timepoints over the full growth period. These validated models predicted future Cobb angle with 80% of predictions within 100 in non-treated idiopathic scoliosis over the full growth spectrum. Improved prediction ability may help clinicians inform treatment prescription or show families why no treatment is recommended”.

SOSORT 2022: the AWARD winners and a fourth ISICO President

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This year’s SOSORT meeting, held in San Sebastian, Spain in the wake of two editions forced online by the pandemic, was a double success for ISICO, which had two studies shortlisted for the SOSORT Award.
One of them, Prediction of Future Curve Angle using Prior Visit Information in Previously Untreated Idiopathic Scoliosis: Natural History in Patients under 26 Years Old with Prior Radiograph, conducted in collaboration with the University of Alberta in Canada, came first, making this the fourth consecutive year that ISICO has taken home the prestigious award. But this was not the only high point. Our Dr Sabrina Donzelli, physiatrist, was named as the next President of the International Society. This is the fourth time that ISICO has had this has honour since SOSORT was founded in 2004,  and it is the first time a woman has been appointed to the role.

“This prestigious appointment is an acknowledgement of Dr Donzelli’s scientific standing, hard work and commitment, as well as a recognition of our institute, which now provides a benchmark for clinical and research activity worldwide” remarked Prof. Stefano Negrini, Scientific Director of ISICO as well as one of the ISICO authors — the others being De Giulia Rebagliati, Dr Fabio Zaina and Dr Alberto Negrini — who collaborated with Dr Eric  Parent, first author of the study that won the SOSORT AWARD. The congress was hugely stimulating and we can’t wait for 2023 and next year’s meeting in Melbourne, Australia”.

Scoliosis: why prevention matters

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About spinal disorders like scoliosis, it is often said that prevention is just as important as treatment.

Before we go any further, let’s clarify a few things, starting with the definitions of screening and scoliosis. Screening is an activity involving rapid tests, examinations or other procedures, and its purpose is to detect the possible presence of a disease or defect that the patient didn’t know they had.

Scoliosis, on the other hand, is a three-dimensional spine deformity.There are different forms, depending on the age at which it was first diagnosed: infantile (diagnosed between 0 and 3 years), juvenile (between 3 years of age and puberty), adolescent (between puberty and the completion of bone growth), and adult-onset. Scoliosis affects 3% of the population, prevalently females; 80% of cases are diagnosed in adolescence.

Two aspects in particular make scoliosis an insidious disease: first, it causes no symptoms of any kind during childhood and adolescence, which makes it difficult to identify young people who are at increased risk of developing spinal deformities; second, in most cases, it is idiopathic, which means we don’t know what causes it. 

Therefore, early diagnosis of scoliosis, i.e., at an age when there is a considerable risk of the condition progressing, allows the patient to receive adequate, less invasive and more effective treatment. This, as far as possible, will prevent it from worsening to the point of causing, in adulthood, pain, progressive deformity and sometimes cardiorespiratory problems that will negatively impact their quality of life.  

Screening: when and by whom?

Scoliosis screening’s importance is widely recognised, also by the scientific community (ref. Screening for adolescent idiopathic scoliosis: an information statement by the Scoliosis Research Society international task force). 

Scoliosis screening should target all girls in their last year of primary school/first year of secondary school and all boys in their second year of secondary education. This is the age at which they reach puberty and are therefore most at risk of progression of scoliosis, if affected by the disease. 

Youngsters should be screened by a spine expert who, through specific tests, can identify those at risk of a spinal deformity.

Screening results are given to the patient directly so that they can decide how to proceed with their doctor. In this way, if necessary, a diagnostic-therapeutic pathway can be planned.

What does Screening involve?

The first thing to do when evaluating whether or not a youngster may have scoliosis is to observe their bare back. The presence of more or less obvious asymmetries at trunk level, such as a difference in the height of the shoulders, or the hips, or a difference between the two shoulder blades, is the first sign of a possible case of scoliosis.

Then, the Adams test is performed, which is crucial: standing with their knees straight, the patient has to bend their trunk forwards, keeping their head down and letting their arms hang limply. This position has the effect of emphasising any hump due to scoliosis. If a hump is observed, it will be measured at the point where the height difference between the two sides of the patient’s back is greatest.

This measurement is taken using the Bunnell method, using a scoliometer to determine the angle of trunk rotation. If this angle measures 5° +/- 2° or more, it is advisable to have a specialist consultation. 

A patient with an angle of 3° or more should be checked every six months if they are approaching or have entered puberty, otherwise at yearly intervals. If a patient’s measurement is below this threshold (between 0 and 2°), but they have one hip or one shoulder higher than the other, or a protruding shoulder blade, then they need to be seen after six months and referred to a specialist if the asymmetries persist; otherwise, they can be referred back to their general practitioner/paediatrician.

How to screen a child online

Visit https://screening.isico.it to carry out a rapid screening for scoliosis or a curved spine, free of charge.
After watching the brief explanatory video, follow the steps and carry out the assessment. This will involve taking a few measurements. Depending on the data you provide us, we can tell you whether it would be a good idea to consult a spine specialist or whether there is currently no reason for concern.

Different specialists, different prescriptions: how should we choose?

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Most parents of a child with scoliosis embark on a similar journey: once they have received the initial diagnosis, they start consulting other specialists, seeking second or third opinions that might provide them with the confirmation and reassurance they need, and/or simply answers to further questions and doubts that have cropped up in the meantime. 

Often, though, parents who do this find themselves left with more questions than answers. This is because different specialists, faced with the same scoliosis case, can make different diagnoses and prescribe different courses of treatment.

Why is this? There may be different reasons. Before going any further, though, it is important to remember that only a specialist with specific training in vertebral pathologies can treat scoliosis. Once a timely and correct diagnosis has been made, it is necessary to decide how to treat the condition. 

The SOSORT guidelines on conservative treatment of scoliosis are an important resource in this regard. Taking into account the best current scientific evidence, as well as the extent of the curves and the degree of bone maturation, they provide suggestions on the most effective treatment. 

What the guidelines offer is not a single, specific course of treatment, but rather a series of options, ranging from the most conservative to the most aggressive, that could conceivably be prescribed in a given patient. 

However, science alone cannot meet all the needs of a long and complex course of treatment of the kind required in scoliosis. The evidence-based medicine approach brings together and combines scientific knowledge, the expertise and experience of the specialist, and the values and desires of the patient, and therefore makes it possible to formulate the most appropriate prescription for the individual case. 

Bearing all this in mind, then, it may well be that one doctor, considering the data collected during the examination and the discussion with the patient and the patient’s family, decides to prescribe a brace where another doctor might instead recommend only specific physiotherapy or even a wait-and-see approach, which consists of monitoring the situation for a few months to see how the scoliosis evolves.
These are very different prescriptions, but they are all valid. The patient will in any case be monitored following the prescription in order to make sure that the type of treatment, and the dose, are correct.
In this way, it is also possible to make any changes needed to avoid under-treatment (insufficient to contain the progression of the disease) or over-treatment (too taxing for the patient).

The big question remains: how do we parents go about choosing? There’s no easy answer. Given that our children will need to be on this therapeutic journey until they have finished growing, the important thing is to find someone we feel we can trust. In other words, we need to choose the specialist — and it must be someone with expertise in the conservative treatment of scoliosis — who we, and our child, felt to be the most reassuring and empathetic.

Once we have made our choice, we need to place our child’s care in the doctor’s hands. It is important to follow the instructions we are given, and not to change anything without the doctor’s agreement, as to do so could undermine the success of the treatment. 

The winning study of the SOSORT Award 2020 has been published

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Two years after winning the SOSORT AWARD, the study “Predicting final results of Brace Treatment of Adolescents with Idiopathic Scoliosis: First Out-of-Brace are Better than In-Brace-radiographs” has finally been published in the European Spine Journal.

 A total of 131 patients were included in the study, the researchers aimed to determine which of the two radiographs is the best predictor of the Cobb angle at the end of treatment (final radiograph). In fact, the in-brace radiograph of adolescents with idiopathic scoliosis (AIS) has been shown to reflect brace efficacy and the possibility of achieving curve correction. Conversely, the first out-of-brace radiograph could demonstrate the patient’s ability to maintain the correction.

The first out-of-brace radiograph predicts end results better than the in-brace radiograph.

“Our research has highlighted – explains Dr. Sabrina Donzelli, author of the research – how important the first x-ray taken without the brace is in predicting end-of-care results. The first out-of-brace radiograph should be considered an essential element of future predictive models and offers an excellent clinical reference for clinicians and patients. The collection of clinical data that occurs routinely during all visits to ISICO has allowed in recent years to be able to develop the so-called predictive models, i.e. we can use the characteristics of the patient to understand how the final results can be predicted or to understand if there are risk factors more important than others to consider when deciding what type of therapy to prescribe “.