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.  

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.

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. ...

Many of the patients who have been diagnosed with the Arnold-Chiari Syndrome, idiopathic Syringomyelia, idiopathic Scoliosis and/or other associated conditions, who elected the Filum System® health method as their treatment of choice, show great kindness and generosity in sharing their experiences in written and video accounts for other patients in similar situations to consider and to raise awareness around the globe.  Meet some of these greathearted individuals and find out about their stories. Nicolas is today eight year old boy who underwent Sectioning of the Filum terminale procedure at a very young age, with only three years. His parents describe how they first felt about the diagnosis and travelling abroad for treatment and share MR imaging from check ups over the years. The most recent MRI reading indicates: ”currently an obvious decrease of the small hydro-syringomyelic cavity between C6and T1 can is observed”. Read the full account and see the ...

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.

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

Today we are sharing some news from the Communications Department of the Institut Chiari & Siringomielia &  de Barcelona with information regarding the activism of patients in France to fight for awareness of diseases they are affected by, recognition of the indicated treatment and reimboursement of the treatment cost by the public services.

“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.

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.