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Institut Chiari & Siringomielia & Escoliosis of Barcelona

Departamento de gestión y comunicación

29th of February: International Rare Disease Day

Publicado por ICSEB el 29 Feb, 2024
 

Rare diseases, despite their name, affect a surprisingly large number of people globally. However, one of the characteristics that makes them “rare” is that their cause is unknown.

In medicine, it is considered that most of rare diseases have a genetic origin, meaning they arise from pregnancy or birth, even if symptoms do not appear until later. Some may also result from combinations of genetic and environmental factors. An early diagnosis is crucial, as a delay can lead to inappropriate treatments or additional complications. However, due to their rarity, they are not studied or understood, and the path to a correct diagnosis and appropriate therapies can be slow and lengthy for many patients and their families.

The Syndrome of Arnold Chiari 0 and I and Idiopathic Syringomyelia, which we focus on and treat in the specialised work of our institute, are no exception to this. They can indeed manifest from birth or later, with symptoms sometimes triggered after trauma. Therefore, the journey towards diagnosis and finding the right treatment is challenging, and often patients experience deterioration during their search.

Thanks to the studies of Dr. Royo Salvador, we now know that the Filum Disease is the common and congenital etiological origin that causes the aforementioned diseases. It dates back to the embryonic development period and can affect various members of the same family.

On this International Rare Disease Day in 2024, we want to emphasise that promoting research and study on Filum Disease and Neuro-cranio-vertebral Syndrome with descent of the cerebellar tonsils and intramedullary cysts allows us to increasingly understand how the mechanism of Filum terminale traction affects the Nervous System in these pathologies. Consequently, early and effective diagnosis and treatments become possible for all patients.

For a better quality of life for the Syndrome of Arnold Chiari I and Idiopathic Syringomyelia patients, support research through a donation to the Chiari & Scoliosis & Syringomyelia Foundation (https://chiarifoundationbcn.com/en/donation-chiari-foundation/), and the future for these patients will become less rare!

The Neuro-cranio-vertebral Syndrome and Coccygeal Dislocation: A Preliminary Study.

Publicado por ICSEB el 22 Dec, 2023

We have the honor to announce that the journal World Neurosurgery: X, from Elsevier, has just published the latest article by Royo-Salvador et al., presenting their findings on the relationship between the Neuro-cranio-vertebral syndrome (NCVS) and anterior coccygeal dislocation: “Neuro-cranio-vertebral syndrome related to coccygeal dislocation: A preliminary study.

“Neuro-cranio-vertebral syndrome (NCVS) includes a set of idiopathic diseases: Arnold-Chiari syndrome type 0,1 and 1.5, idiopathic scoliosis, and idiopathic syringomyelia. It is caused by the pathological traction transmitted by the filum terminale on the neuraxis” Considering that the latter inserts at the coccygeal level, Dr. Royo and his team of neurosurgeons have observed for years in a significant number of cases with this diagnosis that “the alteration of this anatomical segment, such as anterior coccygeal dislocation, can increase the tension exerted by the filum terminale throughout the Central Nervous System.”

 

The study’s conclusions affirm that “The high clinical and radiological prevalence of coccygeal dislocation in patients with Neuro-cranio-vertebral syndrome suggests an association between them. The mechanism involved in coccygeal dislocation can directly influence the development of Neuro-cranio-vertebral syndrome.”

Typically, the recommended treatment in most traumatology and orthopaedic services in the case of coccygeal dislocation is conservative (advising not to bear weight on the coccyx, avoiding or reducing sitting, using cushions or devices that reduce the load while sitting, etc.). Unfortunately, the possibility of NCVS formation is often overlooked, leading to a lack of diagnosis and a satisfactory solution for patients whose quality of life may be affected.

At ICSEB, after years of clinical observation and care for these cases, we propose a minimally invasive surgical treatment using the Filum System® method to eliminate the traction of the Filum Terminale caused or increased by coccygeal dislocation – as a primary or added traumatic factor in NCVS – with excellent results.

On the occasion of this new scientific publication, we congratulate Dr. M. B. Royo-Salvador, Dr. M. Fiallos, P. Villavicencio, and the entire R&D department of ICSEB for their research work that continues to deepen our understanding of the Filum Disease!

For more information on the treatment of NCVS with sacro-coccygeal dislocation, you can visit:

Neuro-Cranio-Vertebral Syndrome due to Sacrococcygeal dislocation

Impacted cerebellar tonsils – Arnold-Chiari 0 – what are they and how can they affect your quality of life?

Publicado por ICSEB el 17 Nov, 2023

Within the field of neurosurgery, an ongoing debate surrounds the diagnosis of Arnold-Chiari Syndrome.

The cerebellar tonsils are an anatomical structure in the lower end of the cerebellum, which have their place in the skull, within the limit of the foramen magnum. When they extend beyond the limit by more than 3-5-7 mm (this value varies depending on the author), and there are no other spinal cord malformations, it is diagnosed as Arnold-Chiari Syndrome type I.

Between 2018 and 2020, some authors introduced a new classification for the types of Arnold-Chiari Syndrome, now including types 0, 1.5, and V.

Within this ongoing discourse, there is a tendency to question whether even a slight descent of the cerebellar tonsils might truly represent a clinical manifestation of Arnold-Chiari, with type 0 being the most contested diagnosis.

In recent literature, some authors report the concept of Arnold-Chiari Syndrome 0 to describe patients who do not have syringomyelia, exhibit minimal tonsillar descent, and display typical Chiari I malformation symptoms and signs such as occipital headaches, posterior cervical pain, and cerebellum-medullary dysfunction. However, there are differing opinions on this classification.

Dr. Royo’s team of specialists confirms that in their case series of patients with Filum Disease, several cases have emerged where the severity of symptoms associated with Chiari malformation does not directly correlate with the extent of tonsillar ectopia. Additionally, they have observed the existence of a clinical presentation similar to Arnold-Chiari I in patients without a clear descent.

In fact, from the perspective of research on Filum Disease as a cause of cerebellar tonsillar descent, the pathologies that can be an expression of Filum Disease in magnetic resonance images include:

any descent of one or both cerebellar tonsils underneath the foramen magnum plane, represented by McRae’s line… We also define as Impaction of Cerebellar Tonsils their contact or intimate closeness with McRae’s line, that we consider to be an incipient form of Descent of the Cerebellar Tonsils, representing the equivalent of what other authors have denominated ‘Chiari malformation type 0’

It would undoubtedly be of great significance for patients if a consensus diagnosis is eventually reached and it is recognized that the condition of impacted cerebellar tonsils within the foramen magnum – which can be observed through magnetic resonance imaging, even when it does not exceed 3 mm – may correspond to a clinical presentation that can impact the patient’s quality of life as much as Arnold-Chiari Syndrome I.

Our Institute provides an effective treatment, the Filum System®, to patients with Arnold-Chiari 0 as well, with excellent results. These results demonstrate that the traction caused by an excessively tense filum terminale can lead to numerous symptoms, even in cases where cerebellar tonsils are only minimally impacted in the foramen magnum. Following our minimally invasive surgical procedure, these symptoms can improve or disappear, thereby restoring a good quality of life for patients.

References:

  • Arnold-Chiari Malformation Joaquin A. Hidalgo; Craig A. Tork; Matthew Varacallo. M. StatPearls Publishing; 2023 Jan. 2022 Sep 5.
  • Ventrolateral Tonsillar Position Defines Novel Chiari 0.5 Classification; Peter F. Morgenstern, Umberto Tosi; World Neurosurg 2020 Apr;136:444-453. doi: 10.1016/j.wneu.2020.01.147.
  • Is there a relationship between the extent of tonsillar ectopia and the severity of the clinical Chiari syndrome?; Heffez DS, Broderick J, Connor M, Mitchell M, Galezowska J, Golchini R, Ghorai J. 2020 Jul;162(7):1531-1538.
  • The Filum disease and the Neuro-Cranio-vertebral syndrome: definition, clinical picture and imaging features, BMC Neurology 2020 20:175.

The Filum System® stops the progression of Arnold-Chiari I syndrome

Publicado por ICSEB el 6 Oct, 2023
>Fig.1 The Magnetic Resonances show a patient’s long-term postoperative course: 6 years after the FS® intervention, the previously very pronounced descent of the cerebellar tonsils is almost no longer detected.

The Filum Disease and the Neuro-Cranio-Vertebral Syndrome can be expressed by various radiological signs, among which is the descent of the cerebellar tonsils below the foramen magnum, also called Arnold-Chiari I Syndrome.

When Dr. M. B. Royo Salvador’s neurosurgical team applies the surgical protocol of the Filum System® method to a patient with Arnold-Chiari I syndrome, the objective of the surgery is to eliminate the cause of the disease, thus stopping its evolution, both in terms of signs and symptoms.

In addition to blocking the descent of the cerebellar tonsils, sectioning the Filum Terminale ligament releases the traction that affects the entire nervous system, thus allowing the recovery of tissues, functions and injuries that are reversible at the time of the surgery.

If, after surgery, the body presents some characteristics of elasticity and organic factors that allow the recovery of the most appropriate anatomical position, it has been proved that in certain cases the cerebellar tonsils tend to ascend towards the foramen magnum.

In our Institute’s caseload, this ascent is observed in some cases 1-2 years after surgery, while in others throughout the first 5-10 postoperative years (Fig. 1).

To our Doctors, the fact that the ascent of the cerebellar tonsils and the clinical improvements experienced by patients are obtained by means of an indirect surgical action performed in a different anatomical area, is a further confirmation that the cause of the disease has been eliminated. The disease is no longer active, nor is the traction force exerted on the spinal cord, brain stem, and spine.

For this reason, after 30 years of excellent results, we can confirm that the Filum System® treatment stops the progression of Arnold-Chiari I syndrome, together with the disappearance or improvement of its subjective symptoms, the satisfactory recovery of objective neurological signs and, in some cases, also the partial or total recovery of the anatomical position of the cerebellar tonsils. The patient’s quality of life improves significantly in the short, medium or long term

BIBLIOGRAPHY
Royo-Salvador, MB, Fiallos-Rivera, MV, Salca, HC et al. BMC Neurol 20, 175 (2020) Royo Salvador MB. Filum System®: a brief guide. Mar 2015.

International Arnold-Chiari Syndrome Day: September 28th.

Publicado por ICSEB el 28 Sep, 2023

Like every year, we join the global recognition of Arnold-Chiari Syndrome, marking this occasion with the hope of a better understanding by the medical community of this condition, and consequently, a better quality of life for patients.

Nearly 50 years ago, Dr. M. B. Royo-Salvador identified the cause behind the descent of the cerebellar tonsils in Arnold-Chiari I: the Filum Disease. From that discovery, he devoted his work to refining an effective surgical solution that targets the condition’s cause and halts progression. This led him to develop a unique, minimally invasive technique: the Sectioning of the Filum Terminale, which is exclusive to the Filum System® method. This technique was published in 1997, with its results presented in 2005. (https://institutchiaribcn.com/en/dr-royo-publications/).

So far, our Institute has treated over 1,500 cases with descent of the cerebellar tonsils and has achieved outstanding results. We have not only met our goal of halting the disease’s progression but in several instances, we have seen the tonsils rise back to their normal position. We have encountered no major complications in any of the cases. Moreover, 94.6% of patients report a better quality of life in the long run, based on follow-ups conducted 15-20 years post-surgery. This success brings deep satisfaction to our patients, their families, and our dedicated team.

Since starting out, Dr. Royo’s team has diagnosed and confirmed over 2,600 cases of Filum Disease with descent of the cerebellar tonsils. These diagnoses have been made both in-person and remotely, with the team also examining many patients’ family members through relevant tests. Given that the Chiari malformation likely has a genetic origin, we have uncovered more related conditions within families, which might otherwise go unnoticed. We address these findings using a safe and efficient approach.

In conclusion, we are hopeful that our team’s successes, combined with the positive outcomes for our patients and the spread of our method, will empower more specialists to better understand this condition. This, in turn, should guide them in selecting the most suitable treatment for those diagnosed with Arnold-Chiari I.

15th anniversary of the Institut Chiari & Syringomyelia & Scoliosis de Barcelona !

Publicado por ICSEB el 12 Jun, 2023

We are excited to celebrate the 15th anniversary of the Institut Chiari & Syringomyelia & Scoliosis de Barcelona (ICSEB). During these 15 years, we have dedicated our efforts to improve the health of individuals suffering from Arnold-Chiari I, idiopathic Syringomyelia and idiopathic Scoliosis and other diseases included in Filum Disease.

Since the foundation of the ICSEB in 2008, we have been pioneers in the diagnosis and treatment of these conditions. We have applied the protocols of the Filum System® method in more than 3000 first consultations and more than 2100 interventions. Patients from 85 countries on five continents have been able to benefit from the sectioning of the filum terminale by means of a minimally invasive surgical technique, which makes it possible to halt the evolution of the pathology, eliminating its cause – the traction that a congenitally tense filum terminale exerts on the entire nervous system.

Each of the patients we have treated has left a deep impression on us. We have witnessed stories of overcoming, courage and hope. Each step along the way has taught us the importance of empathy, respect and holistic, patient-centred care.

We would especially like to thank our patients and their families for their trust in us. Our mission is to provide them with the best medical care and to support them on their way to a full and healthy life.

In addition, we would like to acknowledge the commitment and dedication of our medical team and our collaborators for making it possible for each patient to receive excellent care; from remote counselling, to diagnosis, treatment and long-term postoperative follow-up. Thanks to their experience, knowledge and vocation, we have achieved great results and have been able to make a difference in the lives of many people.

This anniversary and these results encourage us to look to the future with enthusiasm. We will continue to work at the forefront of medicine, driving research and improving the quality of life of our patients.

We invite everyone to join our celebration, sharing knowledge and raising awareness on filum disease and related conditions.

Thank you all for being part of this 15-year journey!

The Filum System® health method stops the progression of idiopathic syringomyelia with possible disappearance of cystic cavities over time

Publicado por ICSEB el 5 May, 2023
Figure.1- A patient’s magnetic resonances and their evolution following the Filum System® treatment, from the first preoperative MRI until the 7-year postoperative check-up, which shows that the medullary cysts disappeared.

Syringomyelia consists of cystic cavities within the spinal cord usually associated with a generalized neurological deterioration. The most frequent symptoms are pain in the extremities, neck pain, alteration of thermal and tactile sensitivity, lower back pain, upper back pain, headache, gait disorders, paresis, sphincter alterations. Living with this condition means dealing with chronic pain and a progressive loss of autonomy.

Our Institute specializes in the diagnosis and treatment of primary or idiopathic Syringomyelia, which, according to Dr M. B. Royo-Salvador’s caudal traction theory, is caused by the Filum Disease. Hence, the syringomyelic cavity is considered to be a consequence of the ischemia produced by the medullary traction that is generated by a tight filum terminale, non-detectable in the neuroimaging.

The treatment we propose to patients at our centre consists in sectioning the Filum Terminale with a minimally invasive technique, according to the exclusive Filum System® health method. The treatment is applied with the objective of eliminating the root cause of the medullary cavities and stopping the progression of the disease.

After 30 years of interventions since Dr Royo’s discovery of the etiopathogenic mechanism of the disease in 1993, our neurosurgical team continues to see that this condition can be treated with excellent results by applying the Filum System® health method.

“Actually”, says Dr. M. Fiallos, one of the neurosurgery team’s specialists: “not only is the progression of the syringomyelia stopped, preventing the cysts from capturing medullary tissue and its necrosis from expanding – as our patients’ postoperative MRIs show in the short term – but there are also cases in which MR images show how the cavities collapse and gradually disappear in the medium and long term, not appearing new ones (Fig.1). Sometimes, no traces of the disease are left in the neuroimaging and in parallel we can observe the patient’s clinical improvement.”

Thanks to the treatment that we apply at our centre, the correct blood circulation in the central nervous system is restored: “the results that we have obtained so far are not immediately visible, since they are the indirect consequence of a surgical act. However, they are very satisfactory, both objectively for the neurosurgeons and subjectively for the patients. We perform postoperative check-ups 7-10 years after the intervention approximately and can confirm that the cavities shrink and patients clinically recover”, says the neurosurgeon.

World Rare Disease Day 2023

Publicado por ICSEB el 28 Feb, 2023

On the occasion of World Rare Disease Day, 28 February each year, we emphasize that Arnold-Chiari syndrome I and syringomyelia are not uncommon to our experts because of their incidence and number in the population. However, they are “orphan” because they have other typical features of this type of disease.
The Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB) follows the Dr. Miguel B. Royo Salvador’s theory of caudal traction. This theory considers that what causes the cerebellar tonsils to descend Arnold-Chiari Syndrome type I and intramedullary cavities to develop in idiopathic syringomyelia, is a consequence of the abnormal traction of the Filum terminale ligament. This ligament is congenitally tenser than normal, affecting the entire central nervous system.
Our center offers patients the Filum System® approach, a unique and proprietary method of diagnosing and treating these diseases, which includes minimally invasive surgical intervention to section the filum terminale with excellent results and without complications, stopping the disease development and improving the Quality of Life of patients. It is an alternative to aggressive routine procedures for these diagnoses with frequent and serious complications.
This year, the focus of International Rare Disease Day is on equity, to achieve that everyone has equal opportunities and access to care. Because rare disease patients are more likely to experience inequality, misdiagnosis, and lack of adequate services in their environment.
Our center (ICSEB) has seen patients from 85 countries on 5 continents, each country has a different healthcare system, some of which do not  have a public healthcare system.
Since 1993, ICSEB has operated on more than 2,200 patients using the Filum System® method with excellent results and a 93% subjective satisfaction rate. Some are reimbursed by their national health systems, others are supported by foundations, including our own – the Chiari & Scoliosis & Syringomyelia Foundation – and most relying on their own funds.
On the website of the Chiari & Scoliosis & Syringomyelia Foundation you can find all the information and the opportunity to get involved in the social help of Filum patients: https://chiarifoundationbcn.com/en/donation-chiari-foundation/
#WorldRareDiseaseDay #RareDiseases

The ICSEB patient care team

Publicado por ICSEB el 13 Jan, 2023

Many may not be aware that at the Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB), we currently attend to patients from 85 different countries, from five continents, and we provide care in 15 languages.
Our neurosurgical team is formed not only by physicians specialised in neurosurgery, anaesthesiologists, and surgical and assistant nurses, but also by a professional figure that has become central in our work: the patient care contact person. Read a note from a few years ago to learn about the field of expertise covered by the international mediation they deal with: Cultural mediation in the activities at ICSEB.
In Spanish, we call our staff who professionally combine the skills of translators, interpreters, cultural mediators, medical and administrative secretaries, patient spokespersons and liaison, “corresponsal”.
The members of the patient care team have a university degree and native and high-level translation skills in at least four or five languages, are trained internally and externally to collaborate in healthcare, take care of the administrative management of clinical documents, and are trained to mediate in the care relationship between healthcare providers and patients. They all work according to the highest quality standard required by our centre.
Sometimes, before embarking on their trip from abroad to visit and undergo surgery at ICSEB, patients worry about whether they will be provided with translation once they are here. We assure them that this is the case, but we do not explain in detail all the role of the patient care contact person entails.
We believe that most patients will come to understand that role during their experience with our team: it is a professional figure who acts as a bridge between the patient and the physician, their family, and the healthcare professionals, who is aware of everything that has been said and done and who accompanies them during all the services provided here in Barcelona. In addition, they sometimes help with the bureaucratic procedures between the country of origin and Spain.
For the doctor, the “corresponsal” represents the patient, and vice versa, for the patient they represent the doctor. They give them the possibility to understand each other and to do so in a common context which, without cultural mediation and only with translation at the language level, would be insufficient because the health systems and their functioning are different.
Our patient care staff holds the “red thread” of the surgical patient’s relationship with the Institute, from the first contact to the last follow-up, including any medical appointment, report, video-call, preoperative tests, admissions, and procedures.
When a patient is hospitalised, they accompany them to induction, to the operating room, and in the recovery room; they are in direct contact with the ward and with the hospital’s patient care department. They are in charge of each patient’s clinical file, and they also know how to interpret the clinical documentation and the complementary and imaging tests – sufficiently to filter before transmitting it to the doctors – to facilitate their work and optimise their tasks.
In summary, speaking to all those who are hesitant to put themselves in the hands of a medical team far away from home, we wish to convey that, in our case there is no need to worry. We are prepared  to offer everything necessary to welcome you in the best way and to take care of your case thanks to the professionalism and mediation specialisation of our patient care team.

28 September 2022: International Arnold-Chiari Syndrome Day

Publicado por ICSEB el 28 Sep, 2022

The Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB) joins the International Day dedicated to the Arnold-Chiari Syndrome – a condition our centre is highly specialized in.

We want to remind those who do not know what it means for patients to suffer from Arnold-Chiari syndrome type I, which by definition is characterised by a descent of the cerebellar tonsils below the occipital foramen of the inferoposterior part of the skull, without other malformations in spinal cord.

Such descent of the lower part of the cerebellum below the foramen magnum, according to the almost 50 years of Dr. Royo-Salvador’s research, has its cause in the Filum Disease. Filum disease arises due the congenital traction of the entire nervous system by the ligament Filum terminale, which is tighter than normal.

Suffering from Arnold-Chiari syndrome Type I can lead to a combination of symptoms that progressively increase in frequency and intensity, such as: headache, neck pain, weakness in the extremities, impaired vision, pain in the extremities, paraesthesia, altered sensitivity, dizziness, issues with swallowing, lower back pain, memory impairment, altered gait, back pain, balance disturbance, dysaesthesia, language disorder, sphincter disturbances, insomnia, vomiting, loss of consciousness, and tremors.

The quality of life of a patient with this condition can decrease significantly before finding the possibility of treatment, and not only because the clinical picture is degenerative. Also, because the surgical solutions that are conventionally offered have a fairly high risk being major surgeries such as craniectomy with suboccipital decompression. For this reason, it is usual to wait until the disease is more advanced before applying this type of invasive treatment, so that the risk of surgery does not exceed that of the pathology.

On the other hand, thanks to the findings of Dr. M. B. Royo-Salvador, who has found a method of diagnosis and treatment called the Filum System®, a greater precision of the affectation of the disease and the elimination of the cause is achieved, with its subsequent evolution being halted; through the minimally invasive surgical procedure of the sectioning of the Filum terminale.

The Filum System® results for Arnold-Chiari Syndrome type I applied at the ICSEB are very positive: the improvement of some symptoms, the disappearance of others and, above all, an improvement in the patient’s quality of life in general -if only because it does not continue to worsen, like before.

Sometimes, one or more years after the procedure, on the follow-up magnetic resonance imaging of some patients, the ascend of the cerebellar tonsils can be observed; but in general, the important thing is to eliminate the tension caused by the ligament Filum terminale.

On this day dedicated to patients affected by Filum Disease with a descent of the cerebellar tonsils, we want to remember all of them and emphasise that there is new hope where there was none before: the possibility of a treatment that can have many benefits with very little risk.

 

The Filum Disease and the research areas of the R&D Department at the Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB)

Publicado por ICSEB el 27 May, 2022

The Research & Development Department at ICSEB was officially created in 2014, following Dr. Royo-Salvador’s tireless work and the Institute’s on-going clinical activity.
In the first years of his academic studies, in collaboration with Professor José María Domenech (Chair of Anatomy and Embryology, Faculty of Medicine, Universidad Autónoma de Barcelona – UAB – from 1975 to 1992), Dr. Royo-Salvador published his doctoral thesis focussed on understanding idiopathic syringomyelia and its etiologic mechanism.
Since then, he devoted himself to understanding what he later discovered was the cause of an excessive caudal traction exerted on the entire nervous system by the Filum Terminale ligament. He described its pathological functioning – until then of unknown origin – within all the related conditions (Arnold-Chiari I Syndrome, idiopathic Siringomielia, idiopathic Scoliosis, Basilar Impression, Platybasia, Odontoid retroflexion, Kinking of the brainstem and others). Hence, he went on to describe a new disease, the Filum Disease, which includes the above-mentioned conditions.
In patients with these diagnoses, Dr. Royo-Salvador started applying a minimally invasive treatment, the Sectioning of the Filum Terminale. The description, implementation and perfection of the surgical technique generated an extensive casuistry, several lines of research and a series of publications dedicated to deepen each new pathognomonic concept related to the Filum Disease and its treatment.
In the meantime, at ICSEB they were developing a set of highly specialized protocols for the Filum Disease, which have been registered as Filum System® health method. These protocols revolve around the etiopathogenesis, the diagnosis, and the medical, surgical and rehabilitation treatment.
In 2020 the ICSEB research team published an article in which they describe the clinical and imaging diagnosis of the Filum Disease, based on a sample of 373 cases. Thus, the Filum Disease and the Neuro-cranio-vertebral syndrome were further reaffirmed as entirely different from other syndromes, with which they were often confused, especially with the Occult tethered cord syndrome.
Currently, our R&D Department, in collaboration with Universidad de Barcelona (UB), Universidad Autónoma de Barcelona (UAB) and Sanitas CIMA Hospital, continues to study all possible areas of interest, conditions that are included and associated with the Filum Disease, technical, methodological, neurosurgical and expert systems advances. Their sole objective is contributing to knowledge and to new findings, to provide patients with a better quality of life.
Most of the research projects, as well as the free trainings on the research findings and the financial aid to support patients’ treatment, are funded by the Chiari & Scoliosis & Syringomyelia Foundation (CSSF). The CSSf’s main and almost only benefactor is Dr. Royo-Salvador. Any additional contribution to the cause will be much appreciated. If you wish to make a donation, please go to: https://chiarifoundationbcn.com/donar/
Research & Development Department at Institut Chiari & Siringomielia & Escoliosis de Barcelona

ICSEB opens the doors of its new home

Publicado por ICSEB el 5 May, 2022

The Institut Chiari & Siringomielia y Escoliosis de Barcelona establishes Casa ICSEB to accommodate not only our care activity for patients from all around the world, but also the work of our R&D department.



People stop us on the street, they congratulate us. Neighbours ask about the construction site on Paseo de Manuel Girona and Calle Dr. Ferrán. Some recognise us because we are from the area; others do not even know who we are. However, everyone is happy with the change happening at the Manuel Girona 32 address. This informative note is for them and everyone who is curious to learn a little more about the building and those who will be occupying it.


Casa ICSEB


The emblematic Noucentista building from the 1920s is located in the Pedralbes neighbourhood, in the current Les Corts district, on the southwest corner of the intersection of Paseo Manuel Girona and Dr. Ferrán Street. Classified as an asset of urban interest, it is part of the historical heritage of the Catalan capital.
Antonio Miracle y Mercader obtained the construction permit from the then Constitutional City Council of San Vicente de Sarriá on 24 April 1915, as Managing Director of the “Promotion of Property” public limited company. For a few years, the two semi-detached houses were in a sad state of abandonment and deterioration, even seeing squatters in different parts of the building.
The new project began in July 2018, after passing through the Department of Heritage and Architecture, History and Art of the Barcelona City Council, the processing of building permits from the Barcelona City Council, Barcelona Parks and Gardens, the Municipal Institute, the report to the Architects’ Association of Catalonia (COAC), the mandatory report of the Prevention, Fire Extinction and Rescue Services (SPEIS), and others.
The Manuel Girona 32 houses, once extended and rehabilitated under the design and guidance of architect Jorge Dávalos Errando, have now become the new Casa ICSEB (short for Institut Chiari & Siringomielia & Escoliosis de Barcelona). ICSEB is a medical and research centre concerned with different neuro-cranio-vertebral conditions, which has the support of professors from the Faculty of Medicine of the Autonomous University of Barcelona, the Institut Neuròlogic de Barcelona and the Chiari & Scoliosis & Syringomyelia Foundation.
As of November 2021, a very promising phase begins: the move to the new offices, to accommodate not only our growing care work for patients from all over the world, but also the work of our R&D department, which studies a pathology that affects all humans and mammals: the Filum Disease.
ICSEB’s NEW ADDRESS Paseo Manuel Girona 32, 08034 Barcelona
We are looking forward to welcoming you at the new Casa ICSEB!
We are committed to continue offering and researching the best solutions for our patients.





Webinar series with the Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB)

Publicado por ICSEB el 22 Apr, 2022
Organized by the Chiari & Scoliosis & Syringomyelia Foundation (CSSF)
 

The purpose of the online meetings is to address the challenges that AISACSISCO members, residents in France and Italy and ICSEB patients, are currently experiencing. The attendees will be able to ask the Institute’s professionals general questions related to medical, administrative, bureaucratic, economical and logistic topics.
The following professionals will participate in the online sessions and clear doubts about general medical, neurosurgical, and psychological issues:
Dr. Miguel B. Royo-Salvador, Neurosurgeon and Neurologist, Director of ICSEB, President of CSSf;
Gioia Luè, General Health Psychologist at CSSf and coordinator of surgical Patient Care at ICSEB;
Translators: Samantha Meir, French Department, Patient Care Elena Vitturi, Italian Department, Patient Care
– Webinar attendance will be free.
– Webinars are aimed at patients and families, representatives and members of the AISACSISCO Association.
The attendees will be able to send their queries in advance to the ICSEB team; should any other topics arise during the sessions, these will be addressed as well (please note that medical queries regarding personal cases will not be answered during the webinars).
Registration: please contact the President of AISACSISCO, Mrs. Marisa Toscano, [email protected], Tel: +390921380360 and Mrs. Maria Teresa Ierano: [email protected]
– Webinar agenda: 22/4/22  12:00-13:30 First webinar in French 29/4/22  12:00-13:30 First webinar in Italian (A) 06/5/22  12:00-13:30 First webinar in Italian (B)
All those who registered to the webinars will receive a link to join each session.

Filum Disease treatment:
Rehab during Covid-19

Publicado por ICSEB el 4 Feb, 2022

Our neurosurgical centre is primarily dedicated to and highly specialized in the diagnosis and treatment of Filum Disease (FD) and the therein-included conditions, such as Arnold-Chiari I Syndrome, idiopathic Syringomyelia and idiopathic Scoliosis.
Unless halted with the Sectioning of the Filum terminale (SFT), Filum Disease is a congenital, latent, neurodegenerative, progressive and chronic disease. Despite the releasing surgical procedure applied to patients, the pathology can leave sequelae that evolve by themselves.
Medical assistance for Filum Disease patients can therefore require four types of specialists:


  • A neurologist or neurosurgeon for the diagnosis.
  • A neurosurgeon or orthopaedist for the application of the adequate surgical treatments for Filum Disease and associated disc herniations, canal stenosis or others.
  • An orthopaedist for the very pronounced cases of scoliosis.
  • A rehabilitator and a neurologist respectively for the vertebral and neurological sequelae that may persist after the surgical procedure.

Our team of specialists considers that physiotherapy following the intervention according to the Filum System® method is fundamental for patients affected by sequelae, to maximise the benefit of the treatment.
Since the emergence of the Covid-19 pandemic however, many patients in different countries report how difficult or impossible it is to access rehabilitation centres, especially swimming pools and hydrotherapy, given the restrictions in place to reduce contagion.
We therefore encourage patients dealing with the mentioned logistical complications, in their short or long-term postoperative stage, to persevere, to move and continue to exercise as much as possible notwithstanding the restrictions. This should be done within the guidelines of a rehabilitator and taking into account what the patient’s autonomy allows, as well as the support available from their family and environment.
We remind you that for any questions that physiotherapists in your territory have regarding Filum Disease and our method, the Filum System® has a team of certified collaborators, who can be consulted to receive indications based on our protocols for post- Sectioning of the Filum Terminale rehabilitation.
You can find their information in the following links:
https://institutchiaribcn.com/en/accredited-centres/centro-medico-mantia/

Neurofeedback and Myotherapy Centre in Belgium

https://institutchiaribcn.com/en/accredited-doctors/dr-marco-di-gesu/

The role of neuroimaging in the diagnosis of Filum Disease

Publicado por ICSEB el 22 Oct, 2021

The specialists at the Institut Chiari & Siringomielia & Escoliosis de Barcelona request to examine the brain and spinal cord magnetic resonances (MRIs) – especially the cranium-cervical, thoracic and lumbar-sacral-coccygeal spine MRIs – in order to confirm the diagnosis of Filum Disease. In addition, a Scoliogram (X-ray of the entire spine on one film, profile and front view, taken in standing position) is requested to study the bony part.
These neuroimaging diagnostic tests allow to detect the characteristic anatomical expressions of the Filum Disease: the descent of the cerebellar tonsils, the syringomyelic cysts, images of ischemia-oedema in the spinal cord, abnormal curves of the spine, malformations of the occipital hinge, multiple disc disease and any other image suggesting an excessive and abnormal traction produced by an overly tense Filum Terminale.
Thanks to the above mentioned neuroimaging tests, many patients have been diagnosed of Filum Disease through other associated conditions, such as Arnold-Chiari Syndrome Type 0 and I, Idiopathic Syringomyelia and Idiopathic Scoliosis, Platybasia, Basilar Invagination, Kinking of the brainstem and Odontoid Retroflexion.

 

The Filum Disease and the lumbar MRI in prone position

Some specialists use a lumbar Magnetic Resonance Imaging (MRI) in prone position for the diagnosis of the Occult Tethered Cord Syndrome.
As for the diagnosis of the Filum Disease, there is no study that demonstrates this MRI is useful. The diagnosis of the Filum Disease is performed exclusively according to the Filum System® method, which is the result of the research carried out at the Institut Chiari & Siringomielia & Escoliosis de Barcelona and whose mark guarantees the application of all its protocols to protect patients from imitations.

International Arnold-Chiari Syndrome Day

Publicado por ICSEB el 28 Sep, 2021

On 28 September, the International Arnold-Chiari Syndrome Day is celebrated, with the main objective of raising social awareness about this condition that is still little known; which generates a series of problems for people who suffer from it.

Unfortunately, most of the patients we attend at Institut Chiari & Siringomielia & Escoliosis de Barcelona, apart from the pain they suffer, report having spent a long time trying to obtain a correct diagnosis and suffer from a lack of understanding regarding their symptoms -both by health professionals and family members-.

For this reason, we want to join this day to show all our support to patients and relatives who live with this pathology -which is much more frequent than it seems-, providing the most valuable tool: information about this syndrome, based on more than 40 years of research by Dr. Royo-Salvador and his team.

This link explains the different types of Arnold-Chiari Syndrome, the symptoms and the treatments available for Arnold-Chiari type I Syndrome.

Arnold-Chiari I Syndrome

Since 2007, our Institute has been involved in the diagnosis, treatment and monitoring of Arnold-Chiari Syndrome and other pathologies considered of unknown cause, which, according to our research, are manifestations of the Filum Disease and today have a treatment that halts the evolution of this condition and improves symptoms.

On this day, 28 September, we want to draw attention to the importance of a correct diagnosis and treatment. Because incorrect information can lead the patient to make a erroneous decision; which would imply very serious consequences for his health.

The postoperative period in the Sectioning of the Filum Terminale according to the Filum System®

Publicado por ICSEB el 27 Jul, 2021

Dr. M. B. Royo Salvador started applying the minimally invasive Sectioning of the Filum Terminale in 1993. Until today, his neurosurgical team operated and carried out the follow-up according to the Filum System® method of over 1850 patients diagnosed of Filum Disease and Neuro-cranio-vertebral Syndrome, with Arnold-Chiari Syndrome type I, Idiopathic Syringomyelia, Idiopathic Scoliosis and other malformations and related conditions.

In the preoperative phase of our patients’ surgical programme, our specialists always emphasize the fact that the surgery eliminates the root cause of the disease and stops its progression or worsening. The intervention does not act directly on the consequences of the condition – i.e. the lesions of the nervous system, the symptoms and associated dysfunctions.

In most patients, from the immediate postoperative period, the improvement or disappearance of some symptoms can be appreciated, while others alleviate over time, in the following months or years. The same occurs in cases with postoperative rehabilitation and physical therapy: many patients present a functional progressive improvement as well, also from the first postoperative months.

On the other hand, there is a minority of patients who, in the first postoperative stage, do not observe any improvement in their clinical picture or in their autonomy, although they are maintaining a stable and not worsening condition. We wish to address ourselves especially to these patients, to prevent them from feeling discouraged and forgotten when comparing themselves with other patients who experienced a favourable outcome in the short or medium term.

First of all, each clinical picture is different and despite the possibility of presenting similar symptoms, they cannot be compared to those of another patient. Only the specialist will be able to assess the evolution of every single patient, through clinical and imaging check-ups.

Secondly, there are two types of lesions that determine symptoms: reversible and irreversible ones. Although, through the application of the treatment, the traction force that the Filum Terminale exerts on the entire nervous system is released, helping recovery also in the medium and long term, the nervous system will not be able to regenerate irreversible lesions, and recovery will be more limited.

Likewise, our specialists observe that initially some patients can experience improvements and, in some cases, even the disappearance of symptoms. However, later on, due to traumas, accidents, stress, medication, menstrual cycle alterations, physical efforts, there can be a relapse, with the recurrence of the clinical picture prior to surgery. When this happens, it usually takes some time before the patient can return to the postoperative stability. In general, once the associated condition is resolved, the patient improves again.

Finally, in some cases, apart from the Filum Disease for which surgery is performed, there can be one or more additional diagnosis with its own clinical picture, which can share some symptoms with the Filum Disease.

Obviously, after the Filum Disease surgery and throughout the postoperative evolution phases, it could be difficult to determine which symptoms depend on one condition and which ones on the other; or whether some symptoms do not improve because they are related to another diagnosis, or they worsen because it is necessary to treat the other condition. In these cases, our Doctors recommend consulting the corresponding specialist to specifically address and treat also the other active and comorbid cause.

To conclude, Dr. Royo’s team, thanks to their highly specialised expertise, confirm that the release of an overly tense Filum Terminale is the most effective way to help improve patients’ health conditions, even when the recovery may seem slower and more gradual, or other complicating factors intervene.

The Sectioning of the Filum Terminale according to the Filum System® method in general unequivocally improves the patients’ quality of life, with a significant remission of symptoms and a very satisfactory recovery in most cases. Furthermore, the treatment provides a good prognosis to patients whose health condition is severely compromised by the disease, despite not acting directly on the consequences of the Filum Disease.

     

COVID-19, the Filum Disease and the “brain fog”

Publicado por ICSEB el 29 Dec, 2020

In the current circumstances marked by the COVID-19 pandemic, many doubts may arise. Patients and family members are wondering, for example, whether people with Filum Disease can be considered a risk group for COVID-19.

At the Institut Chiari & Siringomielia & Escoliosis de Barcelona we would like to provide the most relevant and pertinent information that we have, to try and answer – and possibly solve – these doubts.

COVID-19 is a new condition with a very variable behaviour, making it difficult to identify the factors or circumstances responsible for its mortality or harmlessness.

Researchers and medical professionals are studying in COVID-19 all that is related to both the SARS CoV2 virus and the human host, that make this union so lethal for some patients.

One of the first scientific articles on the severity of COVID-19 is by Zsuzsanna Varga (Zurich, Switzerland) in The Lancet1 April 17 2020, which states the existence of an inflammation of the innermost layer of cells of the blood vessels – the endothelium – of various vital organs, such as the heart, brain and kidneys. There are currently 1680 articles COVID-19 endothelitis in general and 822 articles on COVID-19 brain endothelitis.

 
FIG 1. Lesiones isquémicas difusas de la sustancia blanca profunda. La difusión por RM (se basa en la detección en el vivo del movimiento de moléculas de agua) en un paciente con COVID-19, muestra numerosas lesiones isquémicas focales dentro de la sustancia blanca profunda hemisférica (A, flecha blanca), el cuerpo calloso (A, flecha roja), los ganglios basales, los pedúnculos cerebelosos medios y los hemisferios cerebelosos (B, flechas blancas)2

FIG 1. Diffuse ischemic lesions of the deep white matter. MRI visible diffusion (based on live detection of water molecule movement) in a patient with COVID-19, shows numerous focal ischemic lesions in the hemispheric deep white matter (A, white arrow), the corpus callosum (A, red arrow), basal ganglia, middle cerebellar peduncles and cerebellar hemispheres (B, white arrows) 2.

This inflammation, which appears in the brain endothelium of severe COVID-19 cases, (Fig.1), can cause in many patients a sensation of “brain fog”, a neurological alteration that is observed both in severe and mild patients. It is one of the long-term COVID-19 sequelae that more and pore people report having suffered or are still suffering, with significant consequences for their quality of life.

“Brain fog”, which includes difficulty with memory, concentration, speech and naming, confusion, dizziness, fatigue, may be aggravated in some patients with other brain lesions that favour or predispose to it, in the form of further inflammation or cerebrovascular accidents.

Our medical and research team described a new condition, the Filum Disease, in which a diffuse alteration in the cerebral blood circulation was observed, predominantly in the white matter areas (Figure 2) 3.

 
FIG 2. Lesiones isquémicas difusas de la sustancia blanca profunda.RM en un paciente con Enfermedad del Filum muestra numerosas lesiones isquémicas focales dentro de la sustancia blanca profunda hemisférica, los ganglios basales (flechas rojas), que desaparecieron tras la intervención.

FIG 2. Diffuse ischemic lesions of the deep white matter. MRI of a patient with Filum Disease showing numerous focal ischemic lesions in the hemispheric deep white matter, the basal ganglia (red arrows), which disappeared after surgery.

We can assume that the predisposition to other brain injuries due to endothelitis can aggravate or increase sequelae in patients with COVID-19 and Filum Disease.

We know that this cerebral inflammatory predisposition of the Filum Disease can be solved with the surgical treatment proposed for it, therefore an early diagnosis with the application of the adequate treatment may be recommended.

There exist an additional problem, due to the fact that the Filum Disease, being a recently described condition, hardly diagnosed and apparently of wide global incidence, in general is unlikely to be taken into consideration in association with COVID-19.

 

References

 
  1. ZsuzsannaVarga , Andreas J Flammer , Peter Steiger , Martina Haberecker , Rea Andermatt , Annelies S Zinkernagel , Mandeep R Mehra , Reto A Schuepbach , Frank Ruschitzka , Holger Moch. Endothelial cell infection and endotheliitis in COVID-19. Case Reports. Lancet. 2020 May 2;395(10234):1417-1418.
  2. R Hanafi, P-A Roger, B Perin, G Kuchcinski, N Deleval, F Dallery, D Michel, L Hacein-Bey, J-P Pruvo, O Outteryck, J-M Constans. COVID-19 Neurologic Complication with CNS Vasculitis-Like Pattern. AJNR Am J Neuroradiol. 2020 Aug;41(8):1384-1387. doi: 10.3174/ajnr.A6651.
  3. The Filum disease and the Neuro-Cranio-vertebral syndrome: definition, clinical picture and imaging features. BMC Neurology 2020, May 15. 20:175. https://rdcu.be/b36Pi.

Is there a relation between COVID-19 and Filum Disease?

Publicado por ICSEB el 17 Mar, 2020

In order to answer this question, we have to consider the following:


  1. The COVID-19 is a new disease that has recently transferred from an animal species to humans. Therefore, we know very little about it, it is only 3 months and 18 days old.
  2. We are not aware of any Filum Disease case with COVID-19. Although most likely there are tens of thousands.
  3. We know that patients with COVID-19 present fever, headache, dry cough and, in the most severe cases, respiratory distress which affects the lungs.
  4. The COVID-19 behaves similarly to a common flu. In the majority of cases, 80% can go unnoticed or with very few symptoms.

Given the above-mentioned considerations, we suppose that:


  1. The COVID-19 can increase the headache, as the intracranial pressure increases due to the infectious process and coughing, the latter being considered a Valsalva maneuvre. This can worsen the symptomatology of a possible descent of the cerebellar tonsils or Arnold-Chiari Syndrome Type I.
  2. Cough in COVID-19 can as well aggravate the symptomatology of a syringomyelic cavity, similarly to cough in common flu, that is to say, generally in a very mild way.
  3. Lung involvement in COVID-19 can add to the involvement of the respiratory centre in the brain stem, which can occur in the Filum Disease. This can as well aggravate a restrictive lung syndrome in a severe idiopathic scoliosis. In exceptional cases.
  4. With time, we will see whether COVID-19 affects other organs such as the nervous system, the cardiac system or others. This will condition the prognosis of the association Filum Disease and COVID-19. As far as we have observed, there is little or no possible involvement of other organs due to the COVID-19.
  5. In general, the Filum Disease does not represent an increased risk for the COVID-19.

An open letter to Arnold-Chiari I, idiopathic Syringomyelia and Scoliosis patients, and those affected by other associated conditions.

Publicado por ICSEB el 13 May, 2019
The Institut Chiari & Siringomielia & Escoliosis de Barcelona would like to point out the risks of trusting imprudent health care professionals.
 

There is a multitude of information circulating in the professional domain as well as in communication channels that, if on the one hand it offers different perspectives, on the other, it can complicate understanding and decision making. Medical and health professionals have a responsibility commitment to the sick, to transfer information as clear and exhaustive as possible, to allow them to make the most appropriate decisions about their own health.
The Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB) promotes education and the dissemination of knowledge, being aware that all this affects the patients’ decisions about her/his health and safety. It is on that account that we have prepared this open letter.
We would like to alert about the possible risks of relying on professionals who do not act with due prudence when offering a surgical treatment that they claim is the same as the one practiced by our team. As a matter of fact, they do not have the necessary knowledge nor the experience to achieve our excellent results.
This warning arises due to a misunderstanding about the treatment offered by our Institute. Some people mistakingly believe that the most transcendent aspect of our work is the type of surgical procedure that we perform. However, what is most paramount is to have discovered a new disease, which affects the entire human nervous system: the Filum Disease.
The research carried out by Dr. M. B. Royo-Salvador, ICSEB’s director, has linked together the Arnold-Chiari Syndrome Type I, idiopathic Syringomyelia and Scoliosis and other diseases in a single concept: the Filum Disease. Dr. Royo-Salvador is one of the most prolific authors on these diseases.
The mentioned diseases share the same cause: an abnormal tension of the filum terminale. The Filum Disease affects the spine, the skull and the central nervous system, causing pain throughout the body, changes in sensitivity to temperature and touch, lack of strength in the extremities, fatigue, dizziness, instability, even including alterations of the memory and concentration, and it has a wide range of symptoms and signs. Its consequences can be irreversible.
It is true that the design of an exclusive health method that includes a minimally invasive surgical technique has been a step that saves lives, as it allows us to eliminate the cause of the disease, as well as mortality and morbidity rates of conventional treatments. But it is essential to clarify that this surgical technique is A PART of the health method, which we have developed and that encompasses a series of protocols, which must be respected rigorously.
To offer our treatment correctly, the medical team to apply it needs to know how to correctly diagnose and know what kind of treatment should be applied. Then, it needs to know how to apply it with the best surgical techniques and know how to accompany each case, in a personalized way, for many years.

As you can see the word TO KNOW is repeated in all stages, and that is not a coincidence. To achieve the development of the treatment we offer today, it has been necessary to know, and a great deal! It took more than 40 years of research, which is still ongoing, since our Institute, in addition to seeing patients from more than 75 countries, is the only one in Europe recognized for its research and development of the diseases that we treat, holding the I + D + i accreditation by the Certification Agency in Spanish Innovation (ACIE).
ICSEB has furthermore gained the recognition of innovation by listed in the Spanish Registry of “Innovative SME” of the Ministry of Economy, Industry and Competitiveness; the new “Certification ISO 9001: 2015 (IQNet and AENOR)”, in the activities of research, diagnosis and treatment of the Filum Disease and also in the diagnosis and treatment of neurosurgical diseases.
One of the results of the constant effort to consolidate the protocols and quality standards is the satisfaction rate among operated patients, which is 94.2%, with excellent subjective clinical and surgical results. Likewise, in February 2019, Dr. Miguel B. Royo-Salvador has been distinguished as a member by the Academy of Health Sciences Ramón y Cajal for his research and prestige at an international level.
Even with this successful journey, our Institute has been contacted very rarely by Health care professionals interested in learning more about our treatments. Through the Filum Academy Barcelona®, our center has given free medical and health care training courses to professionals interested in the Filum Disease and in the accreditation for the application of the protocols of our method.
Unfortunately, some medical professionals, instead of helping patients to have treatment with us or to consult us to receive adequate training about our discoveries and the treatments we offer, prefer to try to discredit our work. But when they observe the excellent results achieved, they begin to examine our operated patients and then say that they can “do the same” when, in reality, they are completely unaware of it. And that puts at risk the results of the treatments and, of course, the health of the patients.
We have already received numerous cases of patients who have had poor results and complications, because of professionals who tried to do what, in reality, they did not know. The problems observed include wrong diagnoses and treatments and also ineffective interventions and/or with serious errors, which worsened the clinical picture of the patients.
The problem is that it becomes more complex to reoperate after erroneous treatments and procedures. In addition, some people may be mistaken and think that these poor results are due to the type of treatment we practice at our Institute. This discredits our method and, what is worse, it prevents patients from obtaining the excellent results that the knowledge of a great discovery, a good diagnosis and a great treatment, could offer them. All this would harm not only an investigation of over forty-five years; but also hundreds of millions of affected people who could benefit from our method.
Of course we know that no patient has the duty to know how to differentiate our treatment from what other doctors say they do. Therefore, we believe that we have the duty to alert you to the possible consequences of a wrong decision.
Before taking a decision, ask yourself:

  • Is the neurosurgeon I am talking to a specialist for my condition? How many years has he/she spent studying it?
  • Does he/she have many publications that support his/her knowledge and experience about the subject?
  • Can he/she explain to me clearly why he/she proposes an surgery using their own arguments and data?
  • On how many patients has he/she performed the procedure?
  • Does he/she apply the sectioning of the filum terminale in cases of tethered cord syndrome, when it is generally contraindicated?
  • Does he/she offer economic advantages to try and persuade me?
  • Does he/she say that he/she trained with Dr. Royo when, in fact, ICSEB has already informed me that this is not true?
  • And finally: if you believe that it is such a simple treatment, that any neurosurgeon can do it, why do thousands of patients from all over the world consult and come to the ICSEB?
 

Beware of health care professionals who claim to do what they do not know; these false promises can have serious consequences for your health.
INSTITUT CHIARI & SIRINGOMIELIA & ESCOLIOSIS DE BARCELONA

An open letter to Arnold-Chiari I, idiopathic Syringomyelia and Scoliosis patients, and those affected by other associated conditions.

Publicado por ICSEB el 12 May, 2019
The Institut Chiari & Siringomielia & Escoliosis de Barcelona would like to point out the risks of trusting imprudent health care professionals.
 

There is a multitude of information circulating in the professional domain as well as in communication channels that, if on the one hand it offers different perspectives, on the other, it can complicate understanding and decision making. Medical and health professionals have a responsibility commitment to the sick, to transfer information as clear and exhaustive as possible, to allow them to make the most appropriate decisions about their own health.
The Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB) promotes education and the dissemination of knowledge, being aware that all this affects the patients’ decisions about her/his health and safety. It is on that account that we have prepared this open letter.
We would like to alert about the possible risks of relying on professionals who do not act with due prudence when offering a surgical treatment that they claim is the same as the one practiced by our team. As a matter of fact, they do not have the necessary knowledge nor the experience to achieve our excellent results.
This warning arises due to a misunderstanding about the treatment offered by our Institute. Some people mistakingly believe that the most transcendent aspect of our work is the type of surgical procedure that we perform. However, what is most paramount is to have discovered a new disease, which affects the entire human nervous system: the Filum Disease.
The research carried out by Dr. M. B. Royo-Salvador, ICSEB’s director, has linked together the Arnold-Chiari Syndrome Type I, idiopathic Syringomyelia and Scoliosis and other diseases in a single concept: the Filum Disease. Dr. Royo-Salvador is one of the most prolific authors on these diseases.
The mentioned diseases share the same cause: an abnormal tension of the filum terminale. The Filum Disease affects the spine, the skull and the central nervous system, causing pain throughout the body, changes in sensitivity to temperature and touch, lack of strength in the extremities, fatigue, dizziness, instability, even including alterations of the memory and concentration, and it has a wide range of symptoms and signs. Its consequences can be irreversible.
It is true that the design of an exclusive health method that includes a minimally invasive surgical technique has been a step that saves lives, as it allows us to eliminate the cause of the disease, as well as mortality and morbidity rates of conventional treatments. But it is essential to clarify that this surgical technique is A PART of the health method, which we have developed and that encompasses a series of protocols, which must be respected rigorously.
To offer our treatment correctly, the medical team to apply it needs to know how to correctly diagnose and know what kind of treatment should be applied. Then, it needs to know how to apply it with the best surgical techniques and know how to accompany each case, in a personalized way, for many years.

As you can see the word TO KNOW is repeated in all stages, and that is not a coincidence. To achieve the development of the treatment we offer today, it has been necessary to know, and a great deal! It took more than 40 years of research, which is still ongoing, since our Institute, in addition to seeing patients from more than 75 countries, is the only one in Europe recognized for its research and development of the diseases that we treat, holding the I + D + i accreditation by the Certification Agency in Spanish Innovation (ACIE).
ICSEB has furthermore gained the recognition of innovation by listed in the Spanish Registry of “Innovative SME” of the Ministry of Economy, Industry and Competitiveness; the new “Certification ISO 9001: 2015 (IQNet and AENOR)”, in the activities of research, diagnosis and treatment of the Filum Disease and also in the diagnosis and treatment of neurosurgical diseases.
One of the results of the constant effort to consolidate the protocols and quality standards is the satisfaction rate among operated patients, which is 94.2%, with excellent subjective clinical and surgical results. Likewise, in February 2019, Dr. Miguel B. Royo-Salvador has been distinguished as a member by the Academy of Health Sciences Ramón y Cajal for his research and prestige at an international level.
Even with this successful journey, our Institute has been contacted very rarely by Health care professionals interested in learning more about our treatments. Through the Filum Academy Barcelona®, our center has given free medical and health care training courses to professionals interested in the Filum Disease and in the accreditation for the application of the protocols of our method.
Unfortunately, some medical professionals, instead of helping patients to have treatment with us or to consult us to receive adequate training about our discoveries and the treatments we offer, prefer to try to discredit our work. But when they observe the excellent results achieved, they begin to examine our operated patients and then say that they can “do the same” when, in reality, they are completely unaware of it. And that puts at risk the results of the treatments and, of course, the health of the patients.
We have already received numerous cases of patients who have had poor results and complications, because of professionals who tried to do what, in reality, they did not know. The problems observed include wrong diagnoses and treatments and also ineffective interventions and/or with serious errors, which worsened the clinical picture of the patients.
The problem is that it becomes more complex to reoperate after erroneous treatments and procedures. In addition, some people may be mistaken and think that these poor results are due to the type of treatment we practice at our Institute. This discredits our method and, what is worse, it prevents patients from obtaining the excellent results that the knowledge of a great discovery, a good diagnosis and a great treatment, could offer them. All this would harm not only an investigation of over forty-five years; but also hundreds of millions of affected people who could benefit from our method.
Of course we know that no patient has the duty to know how to differentiate our treatment from what other doctors say they do. Therefore, we believe that we have the duty to alert you to the possible consequences of a wrong decision.
Before taking a decision, ask yourself:  

  • Is the neurosurgeon I am talking to a specialist for my condition? How many years has he/she spent studying it?
  • Does he/she have many publications that support his/her knowledge and experience about the subject?
  • Can he/she explain to me clearly why he/she proposes an surgery using their own arguments and data?
  • On how many patients has he/she performed the procedure?
  • Does he/she apply the sectioning of the filum terminale in cases of tethered cord syndrome, when it is generally contraindicated?
  • Does he/she offer economic advantages to try and persuade me?
  • Does he/she say that he/she trained with Dr. Royo when, in fact, ICSEB has already informed me that this is not true?
  • And finally: if you believe that it is such a simple treatment, that any neurosurgeon can do it, why do thousands of patients from all over the world consult and come to the ICSEB?

Beware of health care professionals who claim to do what they do not know; these false promises can have serious consequences for your health..

 INSTITUT CHIARI & SIRINGOMIELIA & ESCOLIOSIS DE BARCELONA

28 February 2019, Rare Disease Day

Publicado por ICSEB el 28 Feb, 2019

The theme for Rare Disease Day this year is “bridging health and social care”, with the objective of bridging the gaps of communication and coordination among all services, to improve the patient’s well-being.
Knowledge and information are key for both medical and social professionals, as well as for patients and their families. Understanding the disease and the options that are available to manage it can positively influence the patient’s quality of life.
Since its constitution, the Institut Chiari & Siringomielia & Escoliosis de Barcelona, together with the Chiari & Scoliosis & Syringomyelia Foundation and the Filum Academy Barcelona, promotes research, training and dissemination of knowledge about the new Filum Disease, which has been acquired in over 40 years’ work.
With his doctoral thesis in 1992, Dr. Royo Salvador proved the theory that considers several diseases of unknown cause, such as Arnold-Chiari Syndrome Type I, Idiopathic Syringomyelia, Idiopathic Scoliosis, Platybasia, Basilar invagination, Odontoid retroflexion, Brain stem kinking, as part of a new disease concept (the Filum Disease) and that they share a common cause (spinal cord and entire nervous system traction).
For the diagnosis, treatment and follow-up of the Filum Disease and the related conditions, the Filum System® health method has been designed. This protocolized system includes among its treatments the sectioning of the Filum Terminale with minimally invasive surgical technique, which halts the progression of the disease and improves its symptoms with almost no risks nor complications.
Arnold-Chiari Syndrome Type I, Idiopathic Syringomyelia, Idiopathic Scoliosis and other conditions considered to be of unknown cause, are manifestations of the Filum Disease and today they have a treatment.
Find out how we can help you: https://institutchiaribcn.com/en/test-filum-disease/

Pei Chen, Samantha Meir and Lurdes Lozano celebrate 10 years at ICSEB

Publicado por ICSEB el 18 Dec, 2018


2018 has been a year of great celebrations. In June, our Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB) celebrated its 10th anniversary dedicated to pursuing excellence in patient care and in November the Chiari & Scoliosis & Syringomyelia Foundation (CSSf) reached this same milestone. During all these years, the close collaboration between ICSEB and CSSf made it possible for more than 1500 patients from around the world to benefit from the application of the Filum System®. This exclusive method was designed for the diagnosis, treatment and follow-up of the Filum Disease and the related conditions (like Arnold-Chiari Syndrome Type I, Idiopathic Syringomyelia and Idiopathic Scoliosis), with excellent results. That’s the outcome of over 40 years’ research carried out by Dr. Miguel B. Royo Salvador.
Three more celebrations close this 2018. Three veterans at our Institute celebrate 10 years collaborating with Dr. Royo’s staff: Pei Chen, in charge of Chinese and Taiwanese patient care, Samantha Meir, reference person for French and Spanish speaking patients and Lurdes Lozano, responsible for Catalan speaking patients.
In these 10 years, Pei, Samantha and Lurdes attended and accompanied many patients from their very first consultation to the neurosurgical visit, the surgical treatment and postoperative check-ups. The three of them found a mission in their job: they are an indispensable bridge between patient and doctor and a key support when facing a very little known condition, with often devastating consequences. “When I started to work here, I would have never imagined how important this job would turn out to be. At the Institute I found my second family, I feel I’m doing something useful and with a meaning. We deal with people’s health and quality of life, with their happiness after all”, says Lurdes, who shares with Pei, Samantha and every member of the staff at the Institute a strong commitment to patients’ wellbeing. To Lurdes this meant reaching a further level. In fact, in this past year, she turned into a patient herself, thus being able to empathize with the suffering related to this condition and the happiness of recovery as well.
Congratulations Pei, Samantha y Lurdes! We wish you to keep on supporting patients for many more years and to contribute in the dissemination of the Filum System®.