Letter from the President of the Chiari & Scoliosis & Syringomyelia Foundation

With the occasion of the release of the renewed Chiari & Scoliosis & Syringomyelia Foundation website, we would like to share this letter from the organization's president Dr. Miguel B. Royo-Salvador.

My research quest initiated in the mid-seventies, it focused mainly on the cause of idiopathic Syringomyelia, followed by that of the Arnold-Chiari Syndrome Type I and later, on that of idiopathic Scoliosis. I reached the conclusion that the origin of these conditions, and that of many other associated ones, was an abnormal traction of the spinal cord brought about by a congenitally tenser than usual filum terminale.  

I laid the theoretical foundations for a new treatment for these pathologies by means of the surgical sectioning of the Filum Terminale with my doctoral thesis “Contribution to the Etiology of Syringomyelia” (1992). The outcome was the constitution of the health method Filum System^®, a protocolised system designed for the diagnosis and the treatment of a new concept of disease, the Filum Disease. The Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB) is in charge of its application and dissemination.

This new Filum Disease exists since the beginnings of mankind and is present in a good part of the world population, possibly being the most frequent disease, but at the same time, the most unknown one to patients given that the majority of manifestations are not taken into account or are considered to be of little importance by patients as well as by health care professionals.

Rally Adventures following the Filum System® Sectioning of the Filum terminale

C. Merló (left) and Chiari patient E. Tarquini (right)

French patient Emmanuelle Tarquini is on an important date in March, the “Women’s Month”. On the morning of the 19^th, she and her teammate, Cécilia Merló, left from harbour of Barcelona for Morocco, where they are taking part in the 27^th edition of the Rallye Aïcha des Gazelles, the only off-road competition worldwide exclusively for female competitors.

In order to participate, Tarquini has had to face a much bigger challenge than riding in a 4×4 jeep for 2500 kilometres through the Moroccan desert. Her great test has been to overcome the difficulties caused by the Arnold-Chiari I Syndrome, that was bringing about insufferable headaches, also neck pain and paresthesias in her right body half.

Training Course at the Filum Academy Barcelona®

These days, on 23 and 24 February 2017, the first edition of the “Filum System^® Medical – Course for mental health professionals” is taking place in Barcelona. This course has been organized by the Filum Academy Barcelona^® in collaboration with Institut Chiari & Siringomielia & Escoliosis de Barcelona.

The attendeesare mental health professionals who are interested in the “Filum Disease” and the psychological changes caused by this condition, as well as the role of psychotherapy in the post-sectioning of the filum terminale rehabilitation process.

Our international team - New Contact Person for Polish speaking Patients

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. 

Video - Patient testimonials

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 chronic headache. At the age of 19 she found out through a MRI scan that she had the Arnold-Chiari Syndrome I in an advanced stage. Her neurologist advised to undergo decompression surgery.

Miss De Oliveira noticed due to her personal experience that generally physicians do not know this condition well and they offered the craniectomy as the only treatment option. After having undergone the mentioned procedure, her symptoms had gotten even worse. She had to stop working and studying, and her life was practically reduced to taking remedies for her pains.

The patient set out to search the Internet to find out if in the world there are other methods to treat the condition and that is how she came across the Institut Chiari de Barcelona, which offered a treatment completely different to that at other centres. 20 days after the operation, Miss De Oliveira tells us that she is feeling better, without pain, less tired and she feels something new in her body every day. “It is as if I was learning to live.”

To conclude, Miss De Oliveira sends a message to others who may be feeling despair because they have been diagnosed with the Arnold-Chiari Syndrome I. “If you have the opportunity, do not get the craniectomy done. I know that it may seem impossible for many; the Institut Chair is a private centre where you have to pay a high Price, but if you have the chance, come to Barcelona to get the surgery so that you can learn to live and fly again, as did I.”

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You can contact Miss De Oliveira under lais.ovz@gmail.com 

Remember that you can find many other patient stories on our website.