Scoliosis: learning to love yourself and overcome your fears

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

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

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

Stanford University has identified the best researchers in the world; ISICO is part of it!

Isico, with its specialists, is still in the “hall of fame” of the world of researchers: Prof. Stefano Negrini, our scientific director, has risen to 52nd place in the world among those involved in rehabilitation research, first among Italians.
This is to say that Prof. Negrini is among the best researchers and scientists in the world in the field of rehabilitation.
In the general ranking of all branches of scientific research, he is in 37,206th place overall.
How does it work? Every year, a group of analysts from the American University of Stanford, led by Prof. John Ioannidis, in collaboration with the medical publishing house Elsevier and the global research database “Scopus”, collects data relating to indicators of standardised citations, referring to as many as 8.6 million researchers from universities and research centres around the world. The ranking covers the entire career, and all researchers in the world since the 1960s are present. Thanks to the processing of this data on 22 scientific sectors and the related 176 sub-sectors, researchers cited in the top 2% of the ranking are inserted into a database

We started by saying “still” because already in the past, Isico, with some of its specialists, had entered the highest places in the “Expertscape” ranking, an American rating agency that identifies the leading experts in the world in various medical disciplines based on an analysis of a series of parameters and variables.
The site refers to the PubMed database to identify the world’s leading experts in more than 27,000 branches of medicine. Isico, as a clinical institute, was placed in 38th place, first among the structures that deal with non-surgical treatment, while in the ranking of global experts for the treatment of scoliosis (both rehabilitative and surgical), Prof. Negrini was among the top twenty (11th, to be precise).  Also present in the ranking at that time were Dr. Fabio Zaina, physiatrist, and our physiotherapy director, Michele Romano. 

A new confirmation of Isico’s high level of research and scientific experience in the rehabilitation treatment of spinal pathologies aimed at improving daily clinical practice with verified data. 

Do youngsters with scoliosis walk differently ?

In recent years, many studies have been conducted analysing gait and postural control during walking. Some of these have included gait analysis in youngsters affected by scoliosis.

The first thing to emerge from the literature is that the type of scoliosis does not influence gait. Indeed, no differences in the variables analysed were found between patients with adolescent idiopathic scoliosis and those with congenital scoliosis. Therefore, the gait disturbance in scoliosis is secondary to its existence and not related to its onset or aetiology [1].

In general, study results indicated that patients with scoliosis produced an asymmetrical rotation pattern in the frontal and transverse planes [2] and therefore, when walking, shifted their body to the side and rotated on themselves.

The position of the curve actually influences the motor pattern: in adolescent idiopathic scoliosis, patients with a single thoracic curve showed asymmetrical trunk movement in the transverse plane, whereas those with a single lumbar curve showed asymmetrical trunk movement in the coronal plane. These results suggest that the postural control strategy of patients with scoliosis differs according to the curve pattern [3].

Contrary to what X-rays deceptively show, scoliosis is not solely a deformity in the frontal plane but rather a fully three-dimensional deformity that X-rays can show only in two dimensions. This is confirmed by the findings of several analyses in which postural adjustments during walking were observed in all three space planes [4].

Scoliosis reduces the physiological curves in the sagittal plane, mainly due to loss of dorsal kyphosis. One study has, in fact shown that patients with scoliosis “may lean backwards and have posterior postural sway, which may be associated with hypokyphosis during walking” [5].

It has also been observed that adolescents with scoliosis have difficulty maintaining smooth bodyweight transfers during strides and that this difficulty increases with increasing severity of the spinal deformity. Gait parameters, namely the loading response, midstance phase and propulsion phase, were not found to differ between the left and right sides. However, patients with moderate and severe scoliosis had asymmetrical gait periods in both limbs,  suggesting abnormal asymmetrical gait patterns [6].

Given all this information, we were drawn to a recently published meta-analysis in which reduction of the stance phase and restriction of frontal pelvic motion was found to lead to prolonged activation timing of the quadratus lumborum, erector spinae and gluteus medius muscles [7].

A final question was whether these differences in walking might affect youngsters’ daily lives. In this regard, one study, using a pedometer installed on smartphones, showed no difference in daily walking distance between adolescents with and without scoliosis [8].

References

[1] Garg B, Gupta M, Mehta N, Malhotra R. Influence of Etiology and Onset of Deformity on Spatiotemporal, Kinematic, Kinetic, and Electromyography Gait Variables in Patients with Scoliosis-A Prospective, Comparative Study. Spine (Phila Pa 1976). 2021 Mar 15;46(6):374-382. doi: 10.1097/BRS.0000000000003796. PMID: 33620181.

[2] Yang JH, Suh SW, Sung PS, Park WH. Asymmetrical gait in adolescents with idiopathic scoliosis. Eur Spine J. 2013 Nov;22(11):2407-13. doi: 10.1007/s00586-013-2845-y. Epub 2013 Jun 4. PMID: 23732766; PMCID: PMC3886502.

[3] Nishida M, Nagura T, Fujita N, Hosogane N, Tsuji T, Nakamura M, Matsumoto M, Watanabe K. Position of the major curve influences asymmetrical trunk kinematics during gait in adolescent idiopathic scoliosis. Gait Posture. 2017 Jan;51:142-148. doi: 10.1016/j.gaitpost.2016.10.004. Epub 2016 Oct 11. PMID: 27764749.

[4] Wu KW, Wang TM, Hu CC, Hong SW, Lee PA, Lu TW. Postural adjustments in adolescent idiopathic thoracic scoliosis during walking. Gait Posture. 2019 Feb;68:423-429. doi: 10.1016/j.gaitpost.2018.12.024. Epub 2018 Dec 18. PMID: 30594870.

[5] Horng J, Liu XC, Thometz J, Tassone C, Duey-Holtz A. Evaluation of plantar pressures and center of pressure trajectories in Adolescent Idiopathic Scoliosis. Stud Health Technol Inform. 2021 Jun 28;280:131-135. doi: 10.3233/SHTI210451. PMID: 34190074.

[6] Zhu F, Hong Q, Guo X, Wang D, Chen J, Zhu Q, Zhang C, Chen W, Zhang M. A comparison of foot posture and walking performance in patients with mild, moderate, and severe adolescent idiopathic scoliosis. PLoS One. 2021 May 17;16(5):e0251592. doi: 10.1371/journal.pone.0251592. PMID: 33999943; PMCID: PMC8128255.

[7] Kim DS, Park SH, Goh TS, Son SM, Lee JS. A meta-analysis of gait in adolescent idiopathic scoliosis. J Clin Neurosci. 2020 Nov;81:196-200. doi: 10.1016/j.jocn.2020.09.035. Epub 2020 Oct 13. PMID: 33222916.

[8] Gaume M, Pietton R, Vialle R, Chaves C, Langlais T. Is daily walking distance affected in adolescent idiopathic scoliosis? An original prospective study using the pedometer on smartphones. Arch Pediatr. 2020 Aug;27(6):333-337. doi: 10.1016/j.arcped.2020.04.002. Epub 2020 Jun 17. PMID: 32563619.

Will the prominence disappear once the brace is on?

This question, together with others linked to aesthetic concerns, is often asked by parents and by youngsters about to start wearing a brace. After all, scoliosis is characterised by variable and sometimes marked clinical signs at the level of the trunk. The scoliotic prominence, linked to the spinal rotation component of the disease, becomes evident on bending forwards, but in some individuals it is also visible when standing. Changes in scoliosis have been found to be correlated with changes in the prominence, although this is not to say that a given degree of change will necessarily be proportional to a worsening or improvement of the hump; that said, a modification of the prominence can usually be taken as a sign that the scoliosis has changed.

Clinical monitoring of the prominence at medical checkups is therefore essential during brace treatment to establish whether there has been any reduction.

Bracing is a treatment that has two equally important objectives:

  • to stabilise or (when possible) improve the radiographic picture
  • to improve the appearance of the back

Essentially, the corrective force applied by the brace to the trunk reduces the rotation of the vertebrae, limits this particular contributing factor, and shapes the ribs and lumbar musculature to minimise the aesthetic impact of the curve. All these aspects will vary according to the type of brace, the experience of the orthopaedic technician who built it, the specific characteristics of the single spine and, last but certainly not least, the patient’s compliance with the treatment.

As we have said, clinical monitoring of the prominence at medical checkups is necessary, but the importance attached to this aspect should not be taken to mean that vertebral rotation always has an aesthetic impact and therefore constitutes an “enemy” to be fought at all costs.

In reality, in most cases, the problem is visible only to the trained eye of expert clinicians (doctors and physiotherapists), and parents and youngsters learn to see only it after the condition has been diagnosed and pointed out to them.

This is borne out by the fact that parents at the first consultation will often admit that, until then, they had never been aware of their child’s scoliosis and the associated aesthetic changes. For this reason, they usually have the impression that “the whole problem sprang up overnight”.

World Master: ready for the 2024 edition

First, some numbers confirm the idea of an international training event, which has now become part of Isico’s traditional educational offer, together with the Italian Master, the SEAS courses, and the course on the Sforzesco brace construction.
In 11 editions, there were 315 participants from 56 different countries, including 22 European countries, 17 Asian countries, 6 from the Americas, 4 from Africa, and 2 from Oceania. In other words, our World Master Course, which began in 2016, includes the whole world interested in the rehabilitation treatment of spinal pathologies.  

Participants have the privilege of attending the lessons of dozens of teachers among the leading international experts in rehabilitation treatment: “Improving my knowledge and skills about scoliosis, there was a lot of academic information presented in a systematic way. It made me read more, learn more, and learn about a different approach from other countries. It opened my mind to seeing scoliosis from a broader and more accurate perspective, which encourages me daily to learn more“. This is the comment of one of the participants in a past edition, Mohammed Firas Wahbeh, from Syria.  

Therefore, this is a learning opportunity that continues to be successful; in fact, we are close to opening registration for the IX Edition of the Online Master Course “Principles and Practice of Scoliosis Conservative Treatment – PPSCT”, which will start in January 2024.

How is the course organised?
The PPSCT course is delivered entirely online and self-administered through a dedicated online learning platform. It is divided into 16 modules, each lasting two or three weeks.
Every single module generally includes three recorded theoretical lectures (each about 45 minutes long), which participants can listen to at a time to suit themselves, enriched by scientific papers as in-depth material to complete the module task.
Discussion-group sessions complement the learning and the exchange with other students, focusing on specific aspects of the topic touched on within that specific module.

World Master: participants’ experiences
One of the most extraordinary aspects of these eight editions of our international online master course was to meet up and exchange views with students from all over the world who also told us how scoliosis is treated in their countries, what they expected from this training path, and what made the experience of this course unique.

We have mixed a short video of students’ feedback because no one better than those who have attended the course can tell others about it, together with a short presentation of the course given by Prof. Stefano Negrini, scientific director of our institute.

THE ROLE OF 3D ULTRASOUND IMAGING IN THE CLINICAL DIAGNOSIS AND MONITORING OF SCOLIOSIS DURING GROWTH

According to current guidelines, standing anteroposterior radiographs are the most reliable method for diagnosing scoliosis.
However, monitoring scoliosis, especially during growth, entails frequent radiation exposure (a full-spine X-ray every 6-12 months).
Even though there exists a low-dose X-ray system (EOS Imaging System), which we use with our patients, experts in recent years have been focusing on the quest to find an alternative, completely radiation-free system able to provide clinicians with equally reliable information.

Scolioscan®, developed in Hong Kong, is the first ultrasound imaging system that seems to offer valuable support in the clinical setting, both for monitoring scoliosis patients for progression of their curves and for screening populations for scoliosis.
Let’s take a closer look at it. Scolioscan® is a 3D ultrasound system that generates spine images using a volume projection imaging method. For this purpose, the patient’s back is scanned using a linear probe (10 cm wide, with an ultrasound frequency of 7.5 MHz) equipped with an electromagnetic spatial sensing device that allows three-dimensional spine reconstruction.  

The operator performs the scan freehand, using anatomical landmarks for reference: the scan starts from the sacrum (S1) and ends at the last cervical vertebra (C7).

It takes 30-60 seconds to perform, during which the patient has to be in a standing position, resting on four supports. At the end of the scan, the software immediately produces 9 images corresponding to progressively deeper coronal sections. The operator can thus select the image that gives the best view of the spinous and transverse processes of the vertebrae.
Thanks to these landmarks, the software reconstructs the curves based on the ultrasound spinous process angle (USSPA) or the ultrasound transverse process (i.e., lamina) angle (USLA) of each vertebra, identifying the slopes of the curves and the apical vertebrae. An ultrasound curve angle (UCA) is then calculated which measures the curves differently from how this is done on an X-ray. The system developers also worked out a mathematical formula for estimating the patient’s radiological Cobb angle. (1)
This examination is suitable for patients with a Risser sign of between 0 and 2, with one or two curves, and with a BMI of less than 23.
Research (2) has shown very good correlations and agreements between ultrasound (UCA) and radiographic (Cobb angle) measurements, with excellent intra- and inter-operator reliability.
However, more reliability is needed to allow ultrasound imaging to replace radiography, which remains the diagnostic tool of reference for diagnosing scoliosis and for confirming its evolution.  
The absence of radiation exposure is a massive advantage of this new system, allowing an accurate bone profile assessment. This, together with clinical measurements and evaluations, enables the specialist to decide on the course of the patient’s treatment, and can sometimes result in the decision not to perform a follow-up X-ray.  
This system can be used to monitor patients over time based on objective measurements and verify the effect of treatment in the short term, and it could — studies still need to confirm this as a means of helping patients optimise their self-correction movements.
At present, the application of this instrument is still in the exploratory phase, but this exploration should soon clarify all its clinical advantages. Based on our experience to date, Scolioscan® ensures that patients at greater risk of scoliosis progression get more frequent monitoring (even every 3 or 4 months), to help to detect any worsening.
Furthermore, Scolioscan® can also be considered a valid tool for preventive screening for scoliosis in school populations.

(1) Is radiation-free ultrasound accurate for quantitative assessment of spinal deformity in idiopathic scoliosis (IS): a detailed analysis with EOS radiography on 952 patients. Yi-Shun Wong, Kelly Ka-Lee Lai, Yong-Ping Zheng , Ultrasound in Med. & Biol., Vol. 00, No. 00, pp. 112, 2019

(2) 3D ultrasound imaging provides reliable angle measurement with validity comparable to X-ray in patients with adolescent idiopathic scoliosis. Timothy Tin-Yan Lee, Kelly Ka-Lee Lai, Jack Chun-Yiu Cheng, Journal of Orthopaedic Translation 29 (2021) 

Launched in Geneva, the WRA and the rehabilitation song

In July, during the 3rd Global Rehabilitation 2030 meeting, with 82 founding organisations, the World Rehabilitation Alliance was launched in Geneva.
Prof. Stefano Negrini, scientific director of Isico, director of Cochrane Rehabilitation and Cochrane representative, was there, as well as in May when the World Health Assembly adopted a resolution on “Strengthening rehabilitation in health systems” to improve access to rehabilitation care.

The World Rehabilitation Alliance (WRA) is a WHO global network of stakeholders whose mission is to support the implementation of the Rehabilitation 2030 Initiative and the resolution through advocacy activities.

During the meeting, a number of key tools, which WHO and stakeholders have been developing for a number of years, were launched. The WHO’s Rehabilitation Programme is working to integrate rehabilitation into national health systems and train health workers.

song about rehabilitation, written by three-time Grammy Award winner Ricky Kej, was presented at the July conference. Here is the presentation video: https://youtu.be/sMSb8Ud1_bo

Isico launches the second edition of the Sforzesco Course

After a first edition, organised in 2022, that saw participants from 13 countries worldwide, Isico is launching the second edition dedicated to the deepening and construction of its Sforzesco corset.

The combination of theoretical lessons presented by the Isico experts and the practical instructions given by the CPOs who collaborate with Isico are the winning points of this course, which recaptures the knowledge gained over 20 years of clinical practice with more than 10,000 patients wearing our Sforzesco braces.  
This second edition is entirely self-administered by the participants, and you can enrol at any time, without a deadline.
A live lesson will be held in December to summarise the material and address participants’ questions.  

Why joining? According to one of the participants in the last edition: “This training will be the starting point for the new chapter in our facility for the treatment of scoliosis. It will help me implement new strategies in current brace construction about the sagittal profile and in starting construction of the Sforzesco brace“. 
For more information and registration, visit https://en.isico.it/sforzesco-online-course/#top

Changing schools when you wear a brace

Every year, when the beginning of school comes round, we get asked the same question: “I’m changing school. I’m going to have new classmates and teachers. How should I tell them that I wear a brace?”

Well, the best thing is probably to start by telling the student who sits next to you, and then gradually tell the others. Don’t forget, it’s only a treatment, just like braces to treat teeth or glasses for eye problems.

It can be stressful trying to hide, and there’s absolutely no reason why you should! If your brace is well made it shouldn’t be noticeable under your clothes, although obviously if someone tries to tickle you or give you a hug, then they are going to feel your “shell”.  

Tell your friends about it: some of them might be a bit curious to begin with, others will want to help you with your backpack, and you will probably get teased a bit, but if you treat it as something quite normal then they will soon do the same!

It’s important to think carefully about what to wear for your first days at school. It’s best to choose clothes that make you feel good, and make sure you “wear” a big smile, too. Because even though a new school, like all new experiences, can be a bit scary, it will be exciting and interesting too!

What about those who tease you about your brace? Some classmates will tease you in a nice way, and if that’s the case, there’s no need to get offended. Of course, we all know that there can be some rather stupid people in this world, and wearing a brace is one way of working out who they are. Once you know, you will also know not to take any notice of them.

In fact, wearing a brace is a great way of learning not to care about how others may judge you. It will help you to make sure you only spend time with real friends, those who you know you can always count on! Unfortunately, nothing comes easy in life, and making friends takes time and effort, but you have to be prepared to persevere in order to see the results, just like with your brace!

The people who stick up for you and support you when things are tough are your real friends. As for the rest, take no notice of them. They are just people you happen to know!  

ISYQOL: the international version

With a pathology such as scoliosis that requires demanding treatment, at Isico we have known for years how fundamental it is to establish a relationship of trust with the patient and to have him adhere to the therapy, ensuring the possibility of a good quality of life in a brace. For this reason, years ago, a questionnaire was developed where our patients could express their assessment of the impact of wearing a brace on their daily lives.
From these questionnaires, the next step was to develop an online model made available to everyone, where, in ten questions, the patient himself evaluates his own well-being with regard to spinal pathologies (kyphosis, scoliosis, or other).
This is how the ISYQOL (Italian Spine Youth Quality of Life) questionnaire was born, which is based on the concerns expressed by patients and has proven to be particularly appropriate in patients with adolescent idiopathic scoliosis (AIS) who have not been treated surgically. 

In recent years, several studies have been published with adaptations and validations of the original Italian version in different languages. 
The latest revision is an international version published recently in the European Journal of Physical and Rehabilitation Medicine, a “Cross-cultural Validation of the Questionnaire: The ISYQOL International”.
The ISYQOL Italian version was translated into six languages using the forward-backwards procedure. The conceptual equivalence of the items’ content was verified, and any inconsistency was resolved by consensus. Finally, patients were asked to complete the ISYQOL before their consultation or treatment session without external help and without being influenced by their parents.
This work aims to assess the ability of ISYQOL to provide an accurate, cross-culturally equivalent measure of the quality of life for young people with idiopathic scoliosis from seven different cultures and languages (i.e. Canadian English, Canadian French, Greek, Italian, Polish, Spanish, and Turkish).
After this last revision, the questionnaire is now available in many languages. In addition to Italian and English, we have Chinese, Polish, Korean, Arabic, Persian, French, Spanish, and Greek versions.