My brace: my friend ….my enemy!

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Aurora, 15 years old, shares with us her experience with the brace.

“I wasn’t born with scoliosis. My problems began when I was ten years old, and our doctor noticed that my back wasn’t quite as straight as other people’s.

On his suggestion, I had an X-ray that confirmed that I had a scoliotic posture, which corrective exercises could correct. So, I had a few sessions with a posturologist and learned how to do the necessary exercises. My posture improved, and that seemed to be the end of it.

Since I do artistic gymnastics at a competitive level, I often have checkups with a physical therapist, and on one occasion, it was noticed that I had a twisted hip.

We talked this over with my doctor — I was 12 by this time —, and it was decided that I should have another X-ray, which showed up a very mild scoliotic curve, measuring just a few degrees, that needed to be monitored.

I continued doing my sport as usual until, at the age of 13, I started getting a strong pain in my lower back, towards the hip area. It gave me a lot of trouble throughout that year’s artistic gymnastics championship. It was such a strong, searing pain that I had to wear an elastic sheath around my back for support when training and competing. But I never gave in!

I had various tests to try and get to the bottom of this pain, and it was discovered that my scoliosis had got a lot worse, with the curve increasing from just a few degrees to more than 30° in the space of just one year. My spine now had a marked “S” shape that started at hip level and even affected one shoulder blade. The scoliosis was so bad that I had to start wearing a brace without delay.

There were several tests and procedures to go through in order to get the brace, and I received my first one when I was 14 years old. I had to wear it for at least 18 hours a day.

To tell the truth, I wasn’t particularly concerned about the prospect of wearing a brace, partly because I didn’t really know what it entailed. My immediate concern was that I would have to give up my artistic gymnastics. I couldn’t bear that thought! However, as soon as I had been reassured and put this fear behind me, I was ready to start my bracing treatment.  

The first week I really hated it and regarded the brace as an enemy. I couldn’t do the simplest thing! I couldn’t stand comfortably, and it impeded me in everything: I couldn’t put my clothes on or tie my laces, or do so many of the everyday things you normally don’t think twice about. I was really mad! Mad about having scoliosis, about having to wear a brace, and about having to put up with all that pain and discomfort. Why did it have to be me?!

Before long, though, I calmed down and accepted the situation. I was going to have to wear the brace in any case, so there was no point getting mad about it.

My gymnastics helped me a lot in this sense, first of all, because this discipline had helped me, from a young age, to get used to coping with pain and having to make certain sacrifices, and second because it was my only outlet.

When I was training or doing competitions, I would take the brace off and then put it back on again as soon as I had finished.
I have to admit that, to begin with, I felt a bit uncomfortable and embarrassed about wearing it, but those feelings soon disappeared, because I tend not to worry too much about what other people think, and just try to feel good about myself.

I’m 15 years old now, and I have already been wearing a brace for more than a year.

I have had three braces so far, having had to change them frequently due to my growth. Apart from a little pain at the beginning each time as I get used to the new “shell”, it’s all pretty straightforward and easier than before. Now, I can get dressed by myself, do up my own shoes, and so on. Basically, I don’t need anyone’s help.

There is always a degree of discomfort, that doesn’t disappear completely, but now I see my brace as a friend, not an enemy: a friend that is there to help me to solve a problem, to prevent me from getting worse, and to try and make sure that I end up with a straighter back and more attractive silhouette.

So, basically, I have learned to get along with my brace. We are so close (literally!) that I have even given it a name: Dori. I am actually grateful to it because, together with my sport, it is helping me to develop a beautiful physique and a definite waistline (which I didn’t have before). Having said that, quite often I still fall out with it and really can’t stand it!

I have learned to dress in a way that hides my brace as far as possible. I have bought new, more suitable clothes and they help me feel good about myself too!

Nearly a year has gone by now, which is great!

I still don’t know how long I am going to have to wear my brace for, as I still have some growing to do. I guess it will still be some time before I’m done.  I hope that reading about my experience has helped and reassured you, and will encourage you to tackle your own long journey with commitment and determination, just as I am doing. I want to end on a positive note: there’s light at the end of every tunnel, so don’t despair!

All the best… hang in there!”

Aury Gymnastics

World Master open now!

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January saw the kick-off for the sixth edition of the World Online Master PPSCT – Principles and Practice of Scoliosis Conservative Treatment as well as for its second edition in the Chinese language. We are very proud to have collected a total of 63 participants from 24 different countries for both courses with the entry for the first time of countries like Nigeria, Syria and Ireland.

Waiting for the first Live lectures being given at the end of January and early February (for the Chinese edition), we are pleased to report the testimony of a young physiatrist coming from Sri Lanka. She participated in the last edition and sent us her best wishes for the new year.
Thank you Joan!

“I want to express my utmost gratitude to the Isico teaching staff. Thank you very much! I want to share how the scoliosis masterclass has impacted my practice and the whole hospital in managing scoliosis patients. I am a young physiatrist, just graduated last 2018, and am practising at the Philippine Orthopedic Center, which focuses on Orthopedics and Rehabilitation Cases including scoliosis. The master course provided the most in-depth, detailed, evidence-based and up-to-date discussion of all aspects of idiopathic scoliosis from diagnosis, monitoring to management. It has helped me to explain better to my patients and their parents their condition, the natural history, as well as the options for their informed decision-making. I appreciate that the course has even presented up-to-date knowledge on the field, even those preliminary findings on the ongoing studies that are not yet published. I m going to share all these learnings with residents in training on Rehabilitation Medicine. I now have a wider perspective of scoliosis, and one example of an important take-home learning is the importance of the sagittal profile and how to assess it. All these learnings from this course will ultimately lead to improved care of scoliosis patients. I would like to thank our mentors for being very accommodating in answering all our questions and guiding us even with our actual cases in the clinics via email. Thank you for all your research work in the advancement of knowledge on scoliosis. I am looking forward to the possibility of a SPORT brace course for physiatrist and orthotist, and I am looking forward to meeting you and my classmates in future conventions once it is safe to travel.  Happy happy New Year!“

WHO rehabilitation task force: Isico is also there

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Some of Isico’s are part of an international project promoted by WHO (World Health Organization) which aims to draw up rehabilitation guidelines for all countries, including those in the developing world, available to all Ministries of Health.
These rehabilitation guidelines need to be applicable in any context, taking into account the economic means and therapeutic possibilities that differ from country to country.

A large-scale and very ambitious project, involving Isico with three specialists, namely Dr Fabio Zaina, Dr Sabrina Donzelli and Dr Francesca Di Felice. 
The supervision is given by Prof Stefano Negrini, also involved as director of Cochrane Rehabilitation.
“In this process of developing guidelines, we were asked to deal specifically with back pain – explains Dr Zaina – in the first phase, already completed now, we dealt with the bibliographic research. In the second phase, we were asked to collect the scientific evidence in respect to the data collected so as to build the guidelines. At the moment we are working on the final phase: drawing up the guidelines, with great attention also to the sustainability of costs in different countries, and presenting them to the referents of the various countries for their application”.

Scoliosis and posture: the two go hand in hand

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Let us start with one thing we know for sure: idiopathic scoliosis is not a postural complaint, but rather a progressive spinal disorder that causes three-dimensional deformation of the vertebrae.

Although it is still not clear exactly why scoliosis occurs, its progression is known to be due, in part, to the force of gravity (i.e., the force of gravity does not cause the disorder, it simply helps it to progress).

Let us try to explain this in simple terms: our spine is like a tower of building bricks that serves to support us, and the bricks distribute evenly the weight it has to bear. If we have scoliosis, some of our bricks are not correctly shaped.
As a result, they are not properly aligned and our tower (spine) may have curve(s) in it. A spine with curve(s) is no longer able to distribute evenly the weight it has to bear; indeed, this presses down harder on the inside of the scoliotic curve, and less on its outside. 

If our spine is well supported, this effect can be lessened, because the support allows the blocks to realign, and this, in turn, reduces the extent of the curve(s). Conversely, without support, the bricks will slide even further to one side, increasing the angle of curvature and shortening the trunk even more.

What does all this mean? That our scoliotic curve will worsen more rapidly unless we continually correct it.

This is why the exercise-based treatment method used at Isico is based on the principle of SELF-CORRECTION: affected youngsters learn to intervene independently to control and align their spine as correctly as possible, thereby countering its tendency to collapse in the direction of the scoliotic curve.

Let us consider another aspect. On a spinal X-ray, we can measure the degrees of curvature present. The angle of curvature is actually the sum of two components: the deformity itself and the effect of postural sagging in the direction of the curve. The contribution of this second component is largely dependent on our capacity for “self-correction”.

How can we distinguish between these two components, i.e., actual bone deformity and postural sagging, so as to be able to intervene effectively on each of them? Again, on an X-ray, but in this case, it must be taken with the patient lying down, so that the degrees of curvature caused by postural sagging disappear, and all that can be seen, and measured, are those due to the deformity itself.

One study, now rather old but still valid, published in Spine in 1976 (Standing and supine Cobb measures in girls with idiopathic scoliosis, G Torell, A Nachemson, K Haderspeck-Grib, A Schultz), showed that postural sagging in scoliosis causes, on average, 9 degrees of curvature (ranging from 0 to a maximum of 20), and that the degrees attributable to postural failure are independent of the severity of the curve. Another interesting study published in Spine, in this case in 1993 (Diurnal variation of Cobb angle measurement in adolescent idiopathic scoliosis, M Beauchamp, H Labelle, G Grimard, C Stanciu, B Poitras, J Dansereau), shows that back “fatigue” can also affect the Cobb angle. In this study, youngsters with moderate to severe scoliosis (an average of 60 Cobb degrees) were X-rayed in the morning and then in the evening. The X-ray taken in the evening showed an average 5-degree increase in curve severity.

What should we do in treatment terms? Clearly, exercises alone cannot alter the actual bone deformity resulting from the scoliosis, which needs to be treated with a combination of exercises and brace wearing.
Nevertheless, specific exercises and self-correction can do a lot to address the problem of postural sagging. And if this “sagging” is responsible for an increased Cobb angle, we need to work hard at our exercises in order to “eat away” at (reduce) the part of the curve that is due to this component.

Scoliosis: is aesthetics measurable?

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When it comes to scoliosis therapy, aesthetics is one of the goals along with a healthy back.

Aesthetic deformity due to scoliosis and its impact on the patient is considered by the members of SOSORT (International Society On Scoliosis Orthopaedic and Rehabilitation Treatment) as the most important reason for treating AIS; unfortunately, only a few of scoliosis studies were found in PubMed on this topic. 

But can a goal, apparently so subjective, be measurable in a repeatable way to become objective? Yes,according to the data collected by the study Reliability, repeatability and comparison to normal of a set of new stereophotogrammetric parameters to detect trunk asymmetries, recently published by the Journal of BIOLOGICAL REGULATORS & Homeostatic Agents. 

“Aesthetic impairment is a crucial issue in Adolescent Idiopathic Scoliosis (AIS), but to date no objective measurements are available – states Dr Francesco Negrini, Isico physiatrist – for our research, we used the Formetric®, which we usually use to measure sagittal planes. We have established parameters for evaluating symmetries in patients, such as those of the shoulder blades or hips, to obtain objective data related to the aesthetic aspect. In order to validate this instrument for clinical practice, the first step and aim of this study are to evaluate the repeatability of the parameters measured by surface topography in a group of AIS subjects and to test if they can distinguish healthy subjects from AIS patients to develop an objective tool for deformity evaluation of the trunk in AIS patients. For our evaluations, we used a device for surface topography based on the principles of rasterstereography. This device (Formetric®, Diers Biomedical Solutions) can reconstruct digitally in three dimensions the back of any person”.

The study evaluated 15 selected parameters that could be good predictors of scoliosis’ impact on the patients’ trunk.
“We analysed short-term (30 seconds, 38 subjects) and medium-term (90 minutes, 14 subjects) repeatability of surface topography measures and their diagnostic validity in AIS (74 subjects, 33 AIS patients and 41 healthy subjects) – proceeds Dr Negrini – All examined parameters were highly correlated as far as short, and medium-term repeatability is concerned”. 

When it comes to aesthetics we cannot stop at Cobb degrees alone, believing that there is no objective measure: “Symmetries can be measured repetitively, as we did in our study – concludes Dr Negrini – so we can offer an objective measurement of aesthetics in patients with idiopathic scoliosis. The surface topography showed good repeatability. Moreover, some of its parameters are correlated with scoliosis, showing that it could very well evaluate deformity due to this pathology. Thanks to these findings, it will be possible to develop a tool that can objectively evaluate aesthetics in AIS patients.”.

Merry Christmas and Happy New 2021

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It is going to be a strange Christmas and New Year, different from any other. So, as we reach the end of 2020, we send you not only our sincerest greetings, but also a story of hope, trust and new life. Here Rossella, a former patient recalls the end of her treatment. 

“You can never really forget something that was, in effect, a part of you for a very long time. Sometimes I feel like I have forgotten all about it, and yet it only takes a passing thought to take me back to four years ago. 

To say that I remember it with pleasure, that I miss it, and that with hindsight the whole thing was actually quite easy, would be both untruthful and hypocritical. It was difficult, painful and a real burden, and the reality of this is something I can only appreciate fully now that it is all behind me.  

There is nothing unusual about my experience, quite the opposite. Like countless other Isico patients, I was just a normal adolescent, albeit one who had to live her everyday life in a brace.

Every so often, I still find myself thinking back what life was like in a brace. 

When I curl up in bed, for example, I suddenly remember all those nights when I simply couldn’t do that, because in a brace you have to lie straight, and turning your head to one side on the pillow is literally the only movement that you do with ease. 

Now, if a pen falls off my desk when I’m working, I just bend down and pick it up, without having to think twice about it. But this sometimes makes remember how picking up a pen used to be quite a performance! Back then, I would have to get up from the chair, bend my knees to lower myself to the ground, and then reach out at full stretch, scrabbling for the pen, before then standing up again and returning to my chair. 

I also remember that when we went on our summer holidays, I would only go on the beach in the mornings, because in the afternoons I had to wear my brace, and it was so hot I would end up spending the whole time in my hotel room. 

Another thing, how could I possibly forget the way my entire day (going out with friends, going to school, doing sport and so on) had to be planned around when I was meant to be wearing my brace? I used to think of my brace-off time as my “hours of freedom”, because it was then that I was able to behave just like any other girl. 

As I say, it would be wrong to claim that brace wearing wasn’t difficult for me. But, in the same way, it would be dishonest of me if I didn’t make it clear that I have absolutely no regrets about any of it.

Even though they are now relegated to the cellar, I have kept my braces, all five of them, each stored in its grey bag with “Isico” written on it in big blue letters. I have never put them on since my treatment came to an end, but occasionally I go and get them out. 

Had it not been for them, I might now have a curve measuring more than 30°, and would probably be in much more pain than I ever experienced during the treatment

I well remember going to see Prof. Negrini for my very last visit.  Inside my head, a voice was crying out: “Please, tell me it’s all over!”. Well, it was! With the help and support of Prof. Negrini and all the Isico doctors and physiotherapists, I really had done it!

I left his office and burst into tears. I went on crying all afternoon, but they were tears of great joy. 

I was elated. It was over. I had won my battle“.

SEAS in adults

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Over the past 13 years or more, we have published dozens of posts and thousands of comments on our blog dedicated to scoliosis.
The Isico blog 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 engage with patients.


SEAS in adults

“You’re too old now”, “Your scoliosis has stopped now that you’ve finished growing”, “If you want to, do some exercise”… How often do adults with vertebral deformities like scoliosis or hyperkyphosis hear things like this?
Our patients often tell us that on reaching adulthood they become aware of physical changes, in their back, balance and height, and they therefore start looking for answers and treatments.
The natural ageing process does not spare our back and changes are quite normal and to be expected: when they occur, it is important to get active in order to restore elasticity and strength to joints and muscles. But ageing is an entirely different situation compared with the occurrence of spine deviations in young people, in whom we seek to modify the bone structures and consequently reduce the degrees of curvature.
 
Scientific studies in recent years have clarified several aspects, that are worth bearing in mind:

1. Scoliosis exceeding 30 degrees at bone maturity, generally reached between 17 and 19 years of age, is at risk of progressing over the years, resulting in a worsening of the existing curves: and the higher the measurement, the greater the risk of worsening.
2. Will scoliosis inevitably lead to back pain? Absolutely NOT!
3. Does having a correct lateral spinal profile (lordosis-kyphosis) protect us against the reduction of our quality of life due to disability and pain? YES, it does.

In light of all this, it is important to know that in adults, too, it is possible to intervene to correct postural abnormalities and prevent and/or slow down the worsening of scoliosis over time: our approach (SEAS) aims to do just this.
As an effect of the force of gravity, and also the curves that are already present, a scoliotic back will tend to drop down in the direction of the curve, and in many cases, there will also be a forward shift of the trunk. Simple physical activity alone, however useful and beneficial, is insufficient to counteract this phenomenon.
This can only be achieved through specific exercises designed to provide support for the structures of the spine in the opposite direction, and these reinforcement exercises must have precise and individual characteristics, in other words, they must be tailored to the individual patient.

The movements to be carried out must be chosen according to very specific priorities, and this is why it is necessary to turn to qualified professionals who have expertise in dealing with these conditions in adults, using effective approaches.
The SEAS method requires constant collaboration on the part of the patient and seeks to make him “responsible for himself”.
The exercises are carefully worked out for each patient. They are initially performed under the therapist’s guidance and then performed independently, with the patient doing daily repetitions, at home.
Sessions with the therapist are initially scheduled monthly, although this frequency is subsequently reduced, possibly even to only once every three months, and patients are given exercise sheets to follow at home.
It takes at least six months to obtain appreciable results, sufficient to motivate patients to continue and thereby ensure they remain fit well into old age.

What is secondary scoliosis?

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Scoliosis: idiopathic or secondary? Let’s look at the difference.

Scoliosis, defined as a “three-dimensional deformity of the spine”, affects 3% of the population overall, and in 80% of cases its origin is not known.  In these cases, it is therefore termed idiopathic.

In the other 20% of cases, on the other hand, the cause of the scoliosis is known; in these cases, it is secondary to another condition. 

In particular, scoliosis can be the manifestation of congenital defects, i.e. abnormalities that originate before birth, such as abnormalities of vertebral formation like rib or vertebra fusions. It can also occur in inherited genetic syndromes, involving the nervous and/or musculoskeletal systems, and in diseases such as neurofibromatosis, Marfan’s disease, Willi-Prader syndrome and syringomyelia. 

In a further subgroup of cases, scoliosis can be secondary to iatrogenic causes, i.e. a “side effect” of medical treatments such as radiotherapy, or surgical procedures such as laminectomy or thoracotomy.

Finally, scoliosis can also have other causes, such as burns or retracted scars, post-traumatic paraplegia, spinal tumours, or bacterial or parasitic spinal infections.

The specific features of secondary scoliosis, including the mean age at onset, closely depend on the disease with which it is associated. Overall, these forms are more aggressive and less treatment responsive than idiopathic scoliosis.

In all these cases, whether secondary scoliosis is suspected or has already been diagnosed, it is crucial to consult a medical spine specialist. 

If the cause of the scoliosis is not clear the specialist, after performing an in-depth clinical and instrumental evaluation, will refer the patient for further investigations and tests, necessary to confirm or exclude the presence of primary conditions “masked” by the scoliosis. 

Once secondary scoliosis is confirmed, the proposed treatment and its management over time will be planned and adjusted taking into account the patient’s overall condition and its complexities.

Precisely because these forms are often particularly aggressive, it is crucial to contact extremely competent specialists in the field of spinal disorders, in order to start monitoring the evolution of the disease. Only in this way can the best therapeutic and rehabilitation options be identified, on the basis of the patient’s overall conditions and the opportunities, benefits and objectives identified. 

The spine specialist will thus intervene with the agreement of, and in collaboration with, the various healthcare professionals involved in the patient’s care. This multidisciplinary approach is necessary to ensure that every aspect of the patient’s condition is considered in the effort to optimise his/her health.

Best Practice Guidelines for bracing in AIS

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Which are the guidelines for using a brace in idiopathic scoliosis treatment? The study “Establishing consensus on the best practice guidelines for the use of bracing in adolescent idiopathic scoliosis”, just published by the journal Spine Deformity, collected 38 experts who developed a consensus on 67 items across ten domains of bracing which were consolidated into the final best practice recommendations.
Among the experts, from surgeons to physiatrists and physiotherapists, prof. Stefano Negrini, scientific director of Isico: “Bracing is the mainstay of conservative treatment in Adolescent Idiopathic Scoliosis (AIS), but currently there is significant variability in the practice of brace treatment for AIS and, therefore, there is a strong need to develop best practice guidelines (BPG) for bracing in AIS“.
How did you go about developing a common consensus?
Following a review of the literature, three iterative surveys were administered. Topics included bracing goals, indications for starting and discontinuing bracing, brace types, brace prescription, radiographs, physical activities, and physiotherapeutic scoliosis-specific exercises. A face-to-face meeting was then conducted that allowed participants to vote for or against the inclusion of each item. Agreement of 80% throughout the surveys and face-to-face meeting was considered consensus. Items that did not reach consensus were discussed and revised, and repeat voting for consensus was performed.
 “A common adherence to these BPGs is fundamental for developing common protocols on an international level – ends prof. Negrini – furthermore, this consensus on the guidelines will lead to fewer sub-optimal outcomes in patients with AIS by reducing the variability in AIS bracing practices, and provide a framework for future research”.

Message in a bottle: an Isico research

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Isico’s study, “Torsion bottle, a very simple, reliable, and cheap tool for a basic scoliosis screening“, published by Scoliosis and Spinal Disorders, demonstrates how and why scoliosis can be identified using a bottle of water. 

“One of the reasons that make scoliosis a disease that scares so much the parents, is its specific characteristic of being difficult to detect on its onset – explains Michele Romano, director of physiotherapists in Isico – A scoliometer is a professional medical instrument used by specialists such as doctors and physiotherapists to detect the pathology. In the absence of this instrument, is there a simple test for scoliosis that we can do in our own homes? Yes, the Torsion Bottle. Our paper aimed to check the possible usefulness of a simple tool (the Torsion Bottle) developed to offer an instrument for home-use by parents but also for screening purposes in low-income countries”.

The study was divided into two parts. The main purpose was to compare the measurements collected with the torsion bottle and the same measurements collected with the scoliometer in a population of patients accessing our clinic for the rehabilitation treatment following Isico standard evaluation protocols.

The secondary aim was to verify the reliability of blinded inter-operator assessments, performed with the torsion bottle on the same patients by two physiotherapists. These double-blinded measurements were taken periodically for a short-time-interval in our clinic to verify measurement accuracy in the everyday clinical activities.

The conclusion? The torsion bottle is useful to perform a pre-investigation of the presence of a prominence, permitting a simplified assessment of its value, thus referring to a specialist for a medical assessment.

We remind you that you can perform a quick and simple assessment/check for scoliosis or curved back on the website screening.isico.it,where you are simply asked to take some measurements with easily procurable tools like a ruler and others again to be detected with the help of a simple bottle of water, the Torsion Bottle.