Info on Arnold-Chiari I, Idiopathic Syringomyelia, and Idiopathic Scoliosis: Causes and Insights

  On September 28, the International Arnold-Chiari Syndrome Day is celebrated, with the main objective of generating social awareness about this disease 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 & Siringomyelia & 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 the 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 ...

We are delighted to share the good news with you: thanks to the good evolution of the pandemic, the increase in the vaccinated population -including ICSEB staff-, the decrease in travel restrictions by the Spanish government, and the decrease in the rates of infection and mortality; from now on,   our Institute will again receive patients without the need of carrying out a PCR-test or any analytical test related with Covid-19 to access the medical visits on our premises . We will continue to apply all the necessary precautions to ensure your protection:  the use of masks, hand hygiene, and interpersonal distance. We hope that with the new possibilities of international travel and the progressive reduction of the restrictions previously imposed due to healthcare measures, many patients who were waiting for this moment will finally be able to travel to our center so that our team of specialists can help them as soon as possible. You can now book your medical appointments!

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 ha...

The patient had mobility problems in her lower extremities. She didn’t have strength in her legs to stand and was using a wheelchair. Diagnosed with the Neuro-Cranio-Vertebral Syndrome. Filum disease. Descent of the Cerebellar tonsils (Arnold-Chiari Syndrome Type I). Idiopathic Syringomyelia. Multiple disk disease. Odontoid retroflexion, she went the minimally invasive procedure of the sectioning of the filum terminale according to the Filum System® at the Institut Chiari & Siringomielia & Escoliosis de Barcelona in July 2018. You can see recordings from the pre-op day, one day after the procedure and one week post-op.  

We are happy to be able to celebrate our 10th anniversary and strive to continue to share our knowledge and experience regarding the Filum Disease to the benefit of patients everywhere. We want to thank everyone who put their trust in the Filum System® method and in our Institute.  Thank you for your lovely messages! Greetings from our patients Greetings from collaborators    Greetings from Patient Associations    

Cícera dos Santos tells the story of her sister, Maria do Socorro, diagnosed with Arnold-Chiari Syndrome Type I six years ago and operated by means of suboccipital craniotomy (SOC, decompression surgery) four years ago. After the surgery, the patient coninued to get worse: intensification of the pain, breathing difficulty, loss of strength in the upper and lower extremities and many other symptoms. Due to the deterioration of her clinic, she had to start using a wheelchair to move around since August 2017. In addition, Maria do Socorro lost her voice (*) in April of last year. For this reasons it is her sister, Cícera, who is telling her story in this video. Cícera explains that, after the craniotomy, her sister had started investigating about her pathology on the Internet and that she had found the ICSEB and it was like seeing the light at the end of the tunnel. From that moment, both of them started a big group effort to make the trip to Barcelona viable. ...

Almost a year ago now, Dr. Miguel B. Royo-Salvador, MD, PhD, Director of the Institut Chiari & Siringomielia & Escoliosis de Barcelona and President of the Chiari & Scoliosis  & Syringomyelia Foundation , published a bibliographic review on the surgical technique of the foramen magnum decompression in two of the conditions this blog is mainly concerned with, the Arnold-Chiari Syndrome Type I and idiopathic Syringomyelia in the online edition of the Rare Disease Report . Today we would like to introduce this text here on the blog, hoping that you will find it of interest. He discusses the existen debate in the medical world on making the accurate diagnosis and the existence of different types of the Arnold-Chiari Syndrome and the different treatment approaches for this condition and for the often associated idiopathic Syringomyelia. He analyzes what is currently the standard treatment, the foramen magnum decompression, with regards to the associated risks and ...

Today we would like to share with share with you a video testimonial from a patient diagnosed with Neuro-Cranio-Vertebral Syndrome. Filum Disease. Descent of the cerebellar tonsils (DCT. Arnold-Chiari Syndrome I), recorded twenty days after her surgery according to the Filum System® . Our lovely patient is from Brazil and tells us her experience in Portuguese, but you can find a summary in English below.    Surgery date: June 2016   Miss De Oliveira tells us that she was not able top lay and run like other children when she was little because she suffered from pain and breathing difficulties. Her situation got worse in her teens as the pain increased in the head and body, together with fatigue and tremors in legs and eyes. There was a deterioration of the symptoms at the age of seventeen and she saw many physicians of different specialties over the next two years and received different diagnoses, from sinusitis to...

We are pleased to announce that the director of Institut Chiari & Siringomielia & Escoliosis de Barcelona , Dr. Royo Salvador, has been invited to collaborate with the association Worldwide Syringomyelia & Chiari Task Force and to join the medical board of this association that is based in the United States. It aims to educate professionals and patients about the diagnoses that included in the organization’s name. At the same time, it is promoting a study of these diseases at international level under the auspices of the Food and Drug Administration (FDA) and the National Organization for Rare Disorders in North America. We are happy to share this collaboration and we hope it will be bring fruitful and lasting results for the benefit of patients throughout the world. The invitation letter sent to Dr. Royo by the association: http://institutchiaribcn.com/commons//pdf/communication-letters/Letter-WSCTF-ICSEB.pdf

I would like to know if an Arnold Chiari I Syndrome can be operated on in an initial phase / I am being told that the descent of my cerebellar tonsils is not a Arnold Chiari I Syndrome, because it is of few millimetres, and that it does not need to be operated.  Do you agree with this indication? As soon as a descent of the cerebellar tonsils is detected, even if it is mild, our specialists study the complementary magnetic resonance scans, and/or others, in order to confirm whether this is due, or not, to a mechanical traction and identify the cause that brings it about. Example of a mild descent of the cerebellar tonsils.   If the existence of a mechanical traction of the spinal cord is confirmed, and the cause is an excessively tight filum terminale ( Filum Disease ), the SFT procedure is indicated as soon as possible in order to eliminate the traction that is traumatizing the spinal cord. For more Q & A vi sit our website .

We are grateful to Dr. Victoria for sharing his personal experience with two cases of Filum Disease in his family: his wife and his daughter.

Are you looking for more information about the different diagnoses that we treat at the Institut Chiari de Barcelona, about how to get in contact with the medical team, the risks involved in the surgical procedure, the reuqired aftercare, etc?   We  are pleased to inform that the " Frequently Asked Questions Section " on our website is now also available in English. Do you have any suggestions for other questions to be included? Please do not hesitate to leave a comment and let us know. FAQ - Institut Chiari & Siringomielia & Escoliosis de Barcelona

The Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB) is happy to announce that during the past month of May 2015, the Spanish Innovation Certification Agency (ACIE) and ENAC have certified our project “ Research, development and application of the diagnosis and treatment of the new Filum Disease ” as Research and Development (R&D).

At the Institut Chiari & Siringomielia & Escoliosis de Barcelona we are pleased to able to share with you that the current month of June marks the tenth anniversary of the publication of the paper titled “ Results of the section of the filum terminale in 20 patients with syringomyelia, scoliosis and Chiari malformation ” by Barcelona’s neurosurgeon and leader of his team Dr. Miguel B. ROYO SALVADOR in the renowned journal ACTA NEUROCHIRURGICA . The journal is the European Association of Neurosurgical Societies’ official publication.

 Registration and programme now available IX Chiari & Scoliosis & Syringomyelia Foundation Meeting     Lublin, Poland, on Saturday, 27th of June 2015 With the co-operation of the Polish Society of Neurosurgeons Lublin Delegation and the Institut Chiari & Siringomielia & Escoliosis de Barcelona      Filum System. Outcomes in diagnosing and treating the Filum Disease: Arnold Chiari I Syndrome, Idiopathic Syringomyelia and Idiopathic Scoliosis  

“The Neuro-Cranio-Vertebral Syndrome caused by a congenital anomaly of an apparently normal Filum terminale, which however exerts a traction on the spinal cord and the entire nervous system” We consider the “Filum Disease” to be the condition that is caused by an anomalous traction exerted by the filum terminale ligament on the spinal cord. It finds its expression in form of different diseases which previously in medical history have been described as being independent from each other: the Arnold Chiari I Syndrome , Idiopathic Syringomyelia and Idiopathic Scoliosis , Platybasia , Basilar Invagination , Retroflexed Odontoid , Kinking of the brain stem and nocturnal Enuresis .

In today’s post we would like to introduce the different findings, fruit of many years of research and medical practice, which constitute the foundation of our current diagnostic and treatment method.  Dr. Royo Salvador’s research and studies started out in the seventies of the last century, in co-operation with the faculty of medicine of the Autonomous University Barcelona . Part of this research effort was concerned with diseases that are/were considered to be of unknown cause, as are idiopathic Syringomyelia, idiopathic Scoliosis and the Arnold Chiari I Syndrome (regarding the latter different ethiopathogenic theories were proposed at the time, we intent to discuss those further along on this blog) and its outcome are scientific findings that form the practical and theoretical basis to our Filum System ®  method and our Institut’s activity in general.

The Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB) is a highly specialised private centre that is concerned with offering advanced solutions on medical and neurosurgical level for brain and spine diseases. The Institut first comes into existence in Barcelona, Spain, in 2007, and is born out of the need of Miguel B. Royo Salvador, MD PhD, director and founder of the “Institut Neurologic de Barcelona”, for a space where he could dedicate himself to the three pathologies from that the centre takes its name: Arnold Chiari Syndrome I, Idiopathic Syringomyelia and Idiopathic Scoliosis.