Sweet dreams… even if braced: a new Isico study affirms it

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Maintaining a normal sleep-wake rhythm is an important factor when facing brace-therapy because it can affect the treatment itself and improve it.
A factor on which investigated the study of Isico “Actigraphy-based Sleep Parameters and Rest-activity Circadian Rhythm in a Young Scoliotic Patient Treated with Rigid Bracing: A Case Study”, recently published by Yale J Biol Med. 


“Patients treated with a brace, especially in the early stage of the treatment, often report both physical discomfort (pain, excoriations, difficulties in breathing) and psychological issues (depressed mood, social isolation) that can both affect sleep – explains dr. Francesco Negrini, a physician at Isico – We studied actigraphy-based sleep behaviour in a 14-year-old male patient affected by severe idiopathic scoliosis and treated with a rigid brace (Sforzesco brace) 23 hours per day. Rest-activity Circadian Rhythm (RAR) and sleep parameters were studied through actigraphy for seven consecutive days in July 2018. Sleep parameters were also objectively monitored for seven consecutive nights with an actigraph”.


The Actiwatch 2 is a widely used actigraph worn on the non-dominant wrist that has the capability to determine both RARs but also sleep parameters. 
Among the data collected through the Thermobrace sensor, it was found a very good compliance to treatment in the period analyzed, with an objectively reported compliance of 22.8 hours per day.

Adhesion, therefore, to the treatment, good tolerance of the brace during sleep and full activity and movement during the day. These are the data confirming that the patient was not affected in the sleep-wake rhythm by particular difficulties due to the wearing of the brace.

“The correct expression of circadian rhythmicity, together with good sleep behavior, are key factors for the body homeostasis – ends dr. Francesco Negrini – RAR’s characteristics, sleep quantity, and quality were all comparable to the normative age-matched data reported in the scientific literature. Conservative treatment for scoliosis could be a suitable clinical choice to avoid sleep complaints and sleep-related issues”.

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.

The criteria for evaluation of aesthetics in scoliosis

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Our study “Construct validity of the Trunk Aesthetic Clinical Evaluation (TRACE) in young people with idiopathic scoliosis” has recently been published by the journal Annals of Physical and Rehabilitation Medicine.

The aim of this study? Scientifically validate the criteria of evaluation of aesthetics in scoliosis.

Indeed, we recall that aesthetics is recognized as a main outcome in idiopathic scoliosis (IS) treatment, but to date, there are no standard criteria for physicians’ evaluation.

Trunk Aesthetic Clinical Evaluation (TRACE) is a simple 12-point ordinal scale to quantify symmetry as a proxy of aesthetics. TRACE is already diffused worldwide and has been used in clinical research.

” In our study, that included 1553 participants (1334 females, mean age 13 years old), we aimed to validate TRACE and improve it with Rasch analysis – explains prof. Stefano Negrini, Scientific Director of Isico – the statistical technique allows to make more precise measurements.
Let’s take the temperature measurement as an example: is it hot, warm, medium, or a little cold? With this type of analysis we develop a real thermometer, obtaining a numerical data. The same criterion is applied to the measurement of the aesthetics, reliably and effectively, as well as objective because it derives from external observation and not simply from what the patient reports “.


The TRACE ordinal scale has been converted into a Rasch-consistent, interval-level measure of trunk aesthetics in IS patients and can be used to compare different populations.

“TRACE can be used as an outcome measure and in everyday clinical evaluation of IS, even if new developments of the scale are advised – ends prof. Negrini – It is an objective tool, the only one up to now in the literature. The benchmark for the aesthetics in scoliosis which we want to improve more and more with use”

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.

A Christmas Carol from Isico

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Our very best wishes for Christmas and 2020: a whole new year for each of us to “shape” as we like! 

Our greetings come to you with a story.
More than just a trip down memory lane (to the bike rides and dripping lollipops of our youth), “Liquorice Wheels” is a story of hope: a reminder that things work out for the best, most of the time!

Thanks to Roberto Angero, father  of a young Isico patient, who shared with us “his” story and we want to share this story with you as our Christmas Carol for this year.

Liquorice Wheels

Every kid in town would stop to watch him, especially when he reared up for more than a dozen consecutive pedal turns. He could do that – we counted them! He would lift his BMX like a tamed horse and then, balancing on the back wheel, would twist the handlebars, first right and then left. He could steer while rearing, too, and even jump up onto the pavement.

In the afternoon, after homework, we would wait for him on the playing field. He was always the last to appear, and you couldn’t leave without him. Simone was the one with the best bike — the best not because it was new, but because it had belonged to his cousin, who had been in a gang war.

That’s what he used to tell us at least. Simone showed us all the scratches the bike had acquired during various raids, but the thing that amazed us was that sticker on the crossbar with “Iron Maiden” written on it. Simone told us that only gang leaders had that sticker. I believed it because I once saw one on my brother’s friend’s Vespa. Surely, he must have been a gang leader, too, because everyone else just had a Garrelli scooter, and no sticker! Once everybody had arrived at the playing field, we could leave, with Simone in the lead. Elisa, who had a Graziella (ladies’ bicycle), was the prettiest in the group, but she would only ever talk with Simone, and sometimes with Sandrino, too. Filippo, instead, rode a red Saltafoss (mountain bike) with a gearbox, and I remember that he used to make us laugh a lot because he could imitate all our teachers. 

Then there was Tommy, who always brought the ball, which he kept in a plastic bag hanging from his handlebars. Jessica, meanwhile, used her mother’s bike, which had a basket, and she could barely reach the pedals. I remember she wasn’t as pretty as Elisa, and she also wore a strange body brace because she said she had a crooked back, but she always had a great supply of sweets. Sandrino was always the one with a new bike — he used to say that his father was rich —, but he never let anyone have a go. On just one occasion he let Elisa have a ride in exchange for a kiss on the cheek, but that was the one and only time. He was very possessive with his belongings.

The group also included Carlo and Marco, the “little twins”, who were inseparable. They had identical bikes, and they both rode one-handed because the other hand was always holding a lollipop, which dripped to the elbow. Actually, they weren’t twins at all. They had been friends since kindergarten, but they did look very similar, maybe because of all the time they spent together! Then there was me. With my gold coloured bike. Always bringing up the rear. 

Simone usually led the group, and we all fell in behind him, including me, of course. We moved in single file, except for Carlo and Marco, who rode side by side. Whenever Simone decided to go faster, we all had to speed up, but we made sure we never overtook him. We used to go round town that way. Our town, Somma, seemed very little at the time, and we felt like the whole place belonged to us.

There was a group of younger kids that we often encountered, and when we did Simone would rear up, leaving them astonished. On the other hand, we were always careful to avoid the older groups. We were scared of them, although Simone always said that they would never stick around if his cousin were with us! Our bike ride usually ended up at Paradise Street, which was legendary! It was a hilly road that made for a thrilling ride. We would all stop at the top of the first hump. We kept in line, except for Marco and Carlo, and no one ever went before Simone did. The second to go was always Filippo, who would imitate our maths teacher as he careered headlong down the hill, leaving us doubled up with laughter. Brilliant!

Gradually, all the others followed suit, racing down like there was no tomorrow. Jessica and I, on the other hand, almost never took part because we were afraid of falling off. Well, I was afraid of falling off. Jessica didn’t want to ruin her mother’s bike, or so she said! So, we would wait for the others, eating sweets together. After Paradise Street, we would make our way to the playing field. Tommy would get the ball out, while Simone and Filippo formed the teams. These were never even, of course. I always ended up with Marco, Carlo and Jessica. They weren’t much good at football and, what’s more, they always put me in goal. The other team always scored loads of goals, and at the end of the match Simone would tell me I had been lucky because, if his cousin had been there, they would have scored many more. And I let myself believe it.

In those days, evening always came far too fast. You started to hear someone’s mum calling in the distance, usually Sandrino’s, and we knew it was time to call it a day. 

Simone was always the first to go home, quickly followed by Elisa. Tommy would put the football back in its bag, while Filippo would do one of his famous imitations, such as our religious education teacher in a temper, screaming at everyone in a falsetto voice.

Those were the last laughs of the evening. I had to go home, too. I usually said goodbye to Jessica first who, in exchange, gave me a liquorice wheel, while the twins went off together as usual, happily challenging each other to an armpit raspberry contest!

Today, 30 years later, sitting on a bench near those places (now gone) where we used to play, I am lost in thought. The memories of the past blend with thoughts of the present. I find myself remembering how I was always the last one and Simone the cool one.

No one would think that seeing him today: once the blond “golden guy”, now he is overweight, grizzled and balding. He doesn’t have a secure job, and is constantly looking for some “cousin” to liven up his dull life. I also thought about everyone else. For example, about Marco and Carlo, who, years later, still seek each other out just like they did as small children: a brotherly bond that will last forever. I think about Elisa, who used to run after a thousand cool guys like Simone, in the futile hope of finding her Prince Charming among them. Today, she’s still as beautiful as ever; after three divorces, she has now moved on to yet another flashy entrepreneur. Tommy hasn’t changed either: he’s just as “public-spirited” as he always was. Back then he was the one who always thought to bring a ball, now he’s the one likes to get a round of beers in for everyone, especially if Filippo is there. Filippo still loves to entertain everyone, and the more beer he drinks, the more he shoots his mouth off, cracking us all up! Unfortunately, we’ve seen little of Sandrino since his dad’s company went bankrupt, and he had to start learning to get by on his own. By all accounts, he’s not doing too well: he drives a dilapidated van now and has maybe even moved away.

And so that just leaves me. I used to feel like I was at the back of the queue in life, but now I have come to realise I am the luckiest of the bunch. I still have my old friends, but mainly I have Jessica, my lovely wife — now with a perfectly straight back —, who has been by my side all these years, making sure I’m never short of love and affection, or sweets! There’s no point hiding the fact: I’ve always been mad about her!


— 

MARTA, BRACE AND MEDALS

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Marta Pagnini is a former Italian gymnast, captain of the Italian National Rhythmic Gymnastics Team, a Knight of the Order of Merit of the Italian Republic and a member of the Air Force Military Corps and … she has scoliosis!

Discovered when she was thirteen years old initially treated with only exercises, she had to surrender to the corset when she was already 18 and was risking sporting qualification to the competitive activity. Given the late development due to gymnastics and her growth not yet completed, the brace was still an option.
After the inevitable initial moments of fatigue, pain and despair, within a few months, she got used to it and understood that the brace was her ally. She had hoped she wouldn’t have to wear it, but once accepted, everything went downhill. Marta was lucky to have a coach who understood and tried to understand; thus, she was able to express herself to the fullest, feeling at ease despite scoliosis.
Marta has won countless medals, and it was sports activity that was also in the sleeve against the disease: it helped her to keep the physical fitness, elasticity and muscle tone, doing a lot of good to her back.

Martha is living proof of what has been demonstrated recently by an ISICO study, Winner of the SOSORT Award 2019, on over 700 patients according to which those who wear a full-time brace and practice sport are more likely to improve than those who are sedentary. (Effect of sport activity added to full-time bracing in 785 Risser 0-2 adolescents with high degree idiopathic scoliosis).

«Playing sports several times a week, even at a competitive level, has positive effects for those who wear a rigid brace and it makes no sense to forbid it to those who have scoliosis “, underlines Alessandra Negrini, physiotherapist in Isico, who has conducted the research. «Sport is not a therapy so that in the presence of a pathology of the spine it is essential to associate it with a specific treatment. Without any doubt, it has a positive impact: once a week it is irrelevant, from two upwards, the positive effect is much more marked. Not quitting is fundamental, also because competitive spirit is a deep passion and can make therapies easier to accept.»

Marta has recently become patient in our Milan headquarter, where she follows our specific exercise approach to scoliosis with SEAS exercises.

Can scoliosis be treated with exercises?

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The answer is yes, and they are indeed fundamental, but sometimes exercises alone are not enough. Whether or not an exercise-based treatment is sufficient depends, above all, on the severity of the curves and the evolutionary potential of the scoliosis itself, which is partly determined by growth.
Therefore, exercises sometimes need to be combined with another treatment, such as bracing. Rigid  brace wearers always need to do specific exercises in order to minimse the side effects of the brace and maximise its corrective impact.
Patients prescribed the Spinecor wrapping system, a dynamic brace, do not need to do any specific exercises since this device allows movement and therefore guarantees the natural trunk muscle strengthening  that favours correction of the spine. 

Scoliosis treatment can be likened to climbing a mountain; a true climber is well aware that the path ahead of him will present obstacles, but he  is confident he will be able to overcome them in order to reach the top.
That is his goal and he is determined to achieve it, whatever it takes and however long it takes him, because he already anticipates the enormous satisfaction he will feel on finally reaching the summit .

The various treatment options can be seen as different steps on a ladder, where the lowest is the one that has the least impact on the individual, but is also the least effective; instead, the highest step represents the very most that can be done in terms of treatment, and the treatment that will have the greatest impact on the youngster’s daily life. 

The ideal therapy is one that allows the best possible results with the least possible impact.

The first step on the treatment ladder is simple observation; at this level the patient needs to attend frequent medical check-ups in order to keep the scoliosis monitored, and the physician needs to be ready to intervene if the need arises.
The next step involves exercises alone, which are sufficient to control scoliosis of mild and mild-medium severity.
At the next level, patients are offered braces consisting of soft bands, and then, if the condition warrants it, braces made of more or less rigid materials.

Sometimes parents immediately want a therapy that, in their view, gives greater guarantees of success, regardless of the impact on their child.
This attitude is generated by the mistaken belief that opting for  the most aggressive therapy will allow the worst outcome to be avoided, and also by the idea that bracing is more convenient .
To return to the metaphor of the mountain, this amounts to starting the ascent running, in the hope of getting to the top more quickly, but it is an approach that may see the climber paying a very high price in terms of his health and even ending up having to end his career early.

Since scoliosis is an evolving disorder, the treatment, too, needs to be constantly evolving: the best strategy is to be ready  to introduce timely changes in response to emerging needs.

It is important to see the treatment from a global perspective: a patient who starts off simply doing exercises, and does them well for a certain number of months, before then being obliged to wear a brace  will at least have avoided some months of brace wearing, which is certainly a good thing.
Changing treatment does not mean that the previous one was unsuccessful, it simply means that it has become apparent that a  stronger method is needed order to win the struggle (like an arm wrestling contest!) with the scoliosis.

What happens when scoliosis is left untreated?

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Our paper entitled “The natural history of idiopathic scoliosis during growth: a meta-analysis” was published some months ago in the American Journal of Physical Rehabilitation.
The research focuses on 13 studies in the scientific literature that examine the natural history of idiopathic scoliosis, that is to say, the way scoliosis evolves in the absence of any treatment.

“We conducted a systematic search of the literature in order to identify all published studies dealing with the natural history of idiopathic scoliosis. Our aim was to pool the data in a meta-analysis that might provide insight into disease progression rates” explains Isico physiatrist Dr Francesca Di Felice.

The data in the studies included in our meta-analysis were collected from individuals affected by infantile, juvenile and adolescent forms of idiopathic scoliosis from the time of detection until they were fully grown: these individuals, observed over time, never received any treatment for the condition.

 “Some of the studies included, generally the oldest ones, presented methodological weaknesses, such as failing to provide systematic data on the size of scoliotic curves at the beginning and end of treatment, to distinguish clearly between juvenile and adolescent forms, or to consider outcomes other than rate of progression: aesthetics, humps and sagittal balance, for example” Dr Di Felice goes on. “The meta-analysis revealed high rates of progression for all the forms of idiopathic scoliosis, and the data on infantile scoliosis  showed the highest variability: suffice it to say that the three studies referring to that category showed progression rates ranging from 5 to 80%!

I would say there is now little prospect of adding to the available data on the natural history of scoliosis through new randomised studies, given that it has become impossible, from an ethical point of view, to leave scoliosis patients untreated”.

When the brace turns you strong

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Cecilia is 18, and she has been wearing a brace for the past six years. Since she has learned a lot about herself over that time, she has decided to share, in words and pictures, her experience of growing up in a brace. And so here she is, captured with the “friend she loves to hate” in a series of delicate, almost magical, pictures taken by a young photographer.
Let’s hear what Cecilia has to say. 

There was a time when I would never, ever have considered being photographed with my “worst enemy”, but then I met Tatiana Minelli, and changed my mind.

My story begins when I turned 12. It was so hard to accept the prospect of being “locked” in a plastic case for years! I can still remember all the crying, screaming and arguing over it, the sheer desperation I felt at the idea that, once I was wearing my shell, people wouldn’t love me so much, I wouldn’t be accepted, and I would stop receiving all the attention, love and hugs I was used to. 

I had to force myself to take courage and think that, without the brace, my back would eventually give way completely: I had to be prepared to put up with some discomfort now, so that the future me need not suffer. 

I had to re-invent myself, or rather discover a new me. Ever since I was a little girl, I had always loved clothes – drawing them, choosing and matching them –, but now I found myself deciding that I needed to find a way of hiding the brace beneath my clothes. That was my priority, because there was no way I was going to let anyone see it!

My solution was to wear baggy, loose-fitting clothes, far bigger than my true size. It was hard, because when you are that age, you naturally start wanting to show off your figure. The sacrifices and tears that come with having to “befriend” a brace are something that few others can really understand. 

I am so grateful to my parents, my sister and everyone who has always been there for me, no matter what. And that goes for my friends, too. Whatever the occasion, a sleepover, party or trip somewhere, they always knew that I came with a “hidden extra”, and perhaps wouldn’t be able to do all the things they did because it was painful or uncomfortable for me, but they just accepted me, and never made a big deal of it. 

At first, I had to wear the brace all the time, 24 hours a day. Then, as time went, by I was able to reduce, gradually, the number hours I needed to keep it on.

Which brings me to today, and my decision, after eight long years, to finally let people see me in my brace, without any sense of fear or embarrassment and without filters. I have come to realise that I perhaps ought to have let my brace be seen from the start. To paraphrase one of my favourite writers, I should have risen above the “problem” that used to make me feel so awkward, and accepted it with a lighter heart.  

Today, eight years on, I realise that our true value lies in the things that make us different, and that it is my brace that has made me the stronger person that I am today. But wearing a brace has been just the start of my long journey. I am soon to embark on the next phase, and those who know me know that I am again going to have to draw on my reserves of strength and determination. But let’s take things one step at a time!

Thank you, Tatiana Minelli, for the pictures of me and the friend I loved to hate!

P.S. Choosing not to show pain doesn’t mean you don’t feel it.