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

We are grateful to share yet another patient story with you today. ICSEB patient Elizabeth from Philadelphia tells us how for a long time she was receiving diagnoses related to anxiety, depression and fibromyalgia before being diagnosed with Syringomyelia in 2015. Hear more from her in this video, where she explains how she found the Institut Chiari & Syringomyelia & Scoliosis of Barcelona and how the treatment helped her situation.  

Dr Royo-Salvador ’s theory involves the important discovery of the cause for Scoliosis, which had been considered as being “ idiopathic ”, as to say “without known cause”, up to the 1990ies.  Thanks to his etiological explication we now know that Scoliosis can be a clinical manifestation involving an abnormal traction of the spinal cord caused by an excessively tense filum terminale; it is an expression of a Neuro-Cranio-Vertebral Syndrome and/or Filum Disease. (“ Siringomielia, escoliosis y malformación de Arnold-Chiari idiopática. Etiología común ”, Rev Neurol. 1996 Aug; Volume 24, Nº 132; 937 – 959 Dr Royo-Salvador MB).

We are very pleased and grateful to be able to share Mireille's story today; the video was recorded in February 2018. The patient was diagnosed with Neuro-Cranio-Vertebral Syndrome . Filum Disease . Descent of the Cerebellar Tonsils (Arnold-Chiari Syndrome Type I). Idiopathic Syringomyelia and Multiple Disc Disease and underwent the surgical procedure at the Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB) in October 2016. 

We are very happy and grateful to be able to share our young patient Taylor's account of her experience today.

Today we would like to share yet another wonderful patient story. Rafael, a young patient affected by the Neuro-Cranio-Vertebral Syndrome, Filum Disease with an intramedullary cyst (idiopathic Syringomyelia) had to rely on a wheelchair to get around when he arrived at the Institut Chiari & Siringomielia & Escoliosis de Barcelona for his first consultation. After receiving the confirmation that he was a candidate for the Filum System® health method, he underwent the minimally invasive surgical procedure that is part of this method (the sectioning of teh filum terminale). In this video you can follow his post-op course during the first weeks after the procedure with short clips recorded by his family and at the Institute. Here in Barcelona we are very happy for Rafael and his family and very grateful to be able to share these images. We wish him the best for his recovery and rehabilitation and hope to continue seeing these great results.

At the Institut Chiari & Siringomielia & Escoliosis de Barcelona we are very aware that for our patients it is important to be able to express their concerns as freely as possible. Since its foundation, a team of international patient care was built in order to support our medical team in communicating with patients of any language or nationality. More on the topic of cultural mediation in this Blog post here . Today we want to introduce you to our collegue Nina Piorkowska. Polish speaking patients can count on their new contact person since July 2016 to look after them from the first email contact, to the first consultation in person, the surgical treatment and during all of the post-operative follow up process, acting as a bridge between the patients and the medical specialists of the Institut Chiari. 

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 will be addressing some recurring questions among our patients in today's post.    What should you do when your doctor indicates a surgery? Surgical indication must be the result of a detailed study of the case, which takes into consideration all factors, like possible diagnosis and treatments, age, quality of life, expectations, etc. When is the application of Filum System® (FS ® ) surgical protocol indicated for the Filum Disease? As soon as possible after the disease has been diagnosed, to eliminate its cause and prevent the pathology from developing further. The diagnosis Filum Disease means that there is a progressive physical and especially a neurological deterioration ongoing.

Won’t my spinal cord be moving around on the inside after cutting the filum? The sectioning of the filum terminale ligament involves the elimination of the anomalous traction that acts on the patient’s spinal cord and nervous system. Once the surgery is performed, the nervous system is liberated, but no tissue changes its position. Only in some cases we detect that the conus medullaris and the descended cerebellar tonsils, over time and very slowly (normally years after the surgery), may rise by some millimetres.

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.

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.

Today we would like you to introduce to you a litle further the head neurosurgeon of the Institut Chiari de Barcelona. DR. MARCO V. FIALLOS RIVERA HAS BECOME AN INTERNATIONAL REFERENCE IN THE APPLICATION OF THE FILUM SYSTEM ® SURGERY METHOD.   Behind his calm look and gestures hides the figure of an eminent neurosurgeon, leader of the surgical team that performs the sectioning of the filum terminale procedure according to the guidelines comprised within the Filum System ® Surgery method. His excellent quality and high precision technique guarantee the outcomes to be as expected. Those of us who have the pleasure to know him personally know just how preoccupied he is with every single detail of the surgical process.

The surgery of the 21th century has changed radically the different concepts that had remained constant during the 20th century. Patients reject increasingly the paternalistic tone of the old-time professionals and demand more information regarding the attributes of the treatment they will receive and its surgical outcomes. Change and innovation are gradually becoming established in the general opinion and are opening up a space for an increasingly determinant leadership from the surgeon.

“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 .

We are happy to share as one of the first posts on this blog good news with our readers. As of this month, April 2013, the number of patients on which Dr. Royo Salvador and his team have performed the sectioning of the filum terminale surgery (SFT) has gone passed 700! Reaching this important figure encourages us to keep on pursueing our endeavours for the patients´ benefit on a daily basis.