Thursday, 28 February 2019

Rare Disease Day - 28 February 2019 - Association AI.SAC.SI.SCO


Today, 28 February 2019, the 12th edition of Rare Disease Day is celebrated worldwide. This year’s theme revolves around “bridging health and social care”.






·   Supports the Chiari & Scoliosis & Syringomyelia Foundation, which promotes the development of scientific research projects;



·   Bears the logo of the Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB), as its members are patients who underwent the sectioning of the Filum Terminale according to the Filum System® health method. This protocolized method has been designed for the diagnosis, treatment and care of patients with conditions that are considered to be rare, mainly the Arnold-Chiari Syndrome Type I, Idiopathic Syringomyelia and all cranio-occipital malformations and related conditions included in the etiological concept of the Filum Disease. According to the research of the ICSEB’s Director, Dr. M. B. Royo-Salvador, the Filum Disease is the root cause of each one of these manifestations;



·    Offers a point of reference for patients and their families through dialogue, by sharing members’ personal experiences and points of view via social networks and meetings. The purpose is to alleviate the loneliness of those looking for information, desperate after receiving diagnosis and treatment options that can be devastating both physically and psychologically;



·    Helps to find information on the rights of all EU citizens to access cross border quality healthcare.



The spirit of this year’s Rare Disease Day calls on this same social-health care focus. It aims at promoting collaboration and interconnection between medical and social services, in order to build networks, programmes and projects to better assist “rare” patients and their families. A better understanding of the disease in all its aspects and a greater presence in the territory of residence can provide patients with solutions that help manage their condition and possibly improve it.



The Institut Chiari and the AI.SAC.SI.SCO Onlus International Association join forces to improve the quality of life of patients and announce the recent signing of a collaboration agreement. The Association membership allows access to special conditions in the services provided by the Institute to its patients.  




Both the ICSEB and AI.SAC.SI.SCO wish that this initiative can contribute to a better future for Filum Disease patients and hope that their “rare” condition will find understanding and support among social, medical and research professionals.





Celebrate Rare Disease Day with us!



Contact AI.SAC.SI.SCO Onlus: http://aisacsisco.eu/index.php/contact

Preferred contact languages: French and Italian.

Other languages: English (only via email)

Tuesday, 22 January 2019

Patient Testimonial - Pain tremendously improved

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.



 

Monday, 7 January 2019

Chiari Malformation? Some core aspects of interest

Our first post in the new year recaps some bullet points on the Arnold-Chiari Syndrome Type I, which is often referred to as Chiari malformation.


The Arnold-Chiari Syndrome indicates the herniation of the lower part of the en-
cephalon and the cerebellum, the cerebellar tonsils, through the foramen magnum
towards the spinal canal.

Tuesday, 4 December 2018

Patient Testimonial - Summary of a 2 year post-SFT recovery



This patient travelled from the United States of America to Spain for treatment at the Institut Chiari & Siringomielia & Escoliosis de Barcelona for treatment according to the Filum System®. The minimally invasive Sectioning of the filum terminale was applied in September 2016 for her diagnosis Neuro-Cranio-Vertebral Syndrome, Filum Disease, Arnold-Chiari Syndrome Type I, idiopathic Syringomyelia and idiopathic Scoliosis. Now, a little more than two years after the procedure, she generously shares her experience with the recovery process. Thank you, Patricia!



"It has been over 2 years since my surgery. I wanted to wait a long time to give feedback. This is my experience.

Wednesday, 10 October 2018

Video - Post-op Progress in Patient with Gait Disturbance

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.  


The Filum System® Method Halts the Progression of Idiopathic Scoliosis


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).