Il Giornale del Friuli Libero – Sfuei dal Friûl Libar, 13/11/ 2011

Link: https://www.ilgiornaledelfriuli.net/varie/12-13-novembre-2011-comunicati-stampa/

Der AI.SAC.SI.SCO für die großen Mühen aller ihrer Vertreter; dafür, dass sie die wunderbare Tagung am Samstag möglich gemacht haben; für die wertvolle Hilfe, die sie alltäglich den italienischen Patienten bieten. In der Erwartung, dass dies nur ein weiterer Abschnitt unseres gemeinsamen Weges ist, und dass wir nach Triest noch viele weitere zusammen zurücklegen werden. Danke!

Dem medizinischen Zentrum Mantia, für die Mitwirkung ihrer Ärzte und Physiotherapeuten, die sich als wesentlich erwiesen hat, in der Erwartung, dass die gemeinsame Aktivität sich wie gewohnt im Interesse der Kranken weiterführt und wir zusammen viele Tage wie den 15. wiederholen können. Danke!

Der Präsidentin der Vereinigung A.M.I.S des M.O.M, Frau Estelle Lussiana, die von so weit gekommen ist, um im Namen der grenzübergreifenden Solidarität im Kampf an der Seite der italienischen Patienten anwesend zu sein. Danke!

Allen Patienten, Familienangehörigen, Spezialisten und Freunden, die uns mit ihrer Anwesenheit und Aufmerksamkeit beehrt haben. Danke!

Dr. M. B. Royo Salvador und das gesamte Team des ICSEB

Die Stiftung „Chiari & Scoliosis & Syringomyelia Foundation“ wurde von der AI.SAC.SI.SCO (Italienischer Patientenverein – Arnold Chiari Syndrom – Syringomyelie – Skoliose Filum Tomizzati onlus) eingeladen, im Oktober diesen Jahres, ein viertes internationales Patiententreffen in Palermo-Sizilien (Italien) zu organisieren, in Zusammenarbeit mit dem „Institut Chiari & Siringomielia & Escoliosis de Barcelona„, weiteren Körperschaften und Experten.

Der genaue Termin sowie weitere Angaben und Details zum Treffen werden in Kürze bekanntgegeben.

Letzten Montag, den 11. April, hat die „Chiari & Scoliosis & Syringomyelia Foundation“ das in Kooperation entstandene Projekt „Dreidimensionales Modell zur biomechanischen Simulation des neuro-craneo-spinalen Syndroms: anwendbar in der Behandlung der idiopathischen Skoliose, Syringomyelie und Arnold Chiari I“ der Stiftung „Marató TV3“ im Rahmen der jährlichen Subventionsausschreibung vorgestellt. In diesem Jahr gilt der Aufruf für Projektvorschläge zum Thema: erworbene Hirn- und Rückenmarkverletzungen.

Dieses bedeutende Projekt wurde von der „Chiari & Scoliosis & Syringomyelia Foundation“ in Zusammenarbeit mit der Fakultät für Medizin und Mathematik der Universidad de Barcelona und dem Institut de Bioingenieria de Catalunya zustande gebracht.

Wir freuen uns Ihnen mitzuteilen, dass das Institut Chiari ab März zwei neue Mitarbeiterinnen in Ihren Reihen begrüßt, die  sich der deutschen, rumänischen, polnischen und portugiesischen Patienten annehmen werden und somit dazu beitragen unser Wissen über die Behandlung von Krankheiten, die mit einer erhöhten Zugkraft auf das Rückenmark in Verbindung gebracht werden, an mehr Betroffene weltweit weiterzugeben.

Wir heißen unsere neuen Mitarbeiterinnen willkommen und wünschen Ihnen eine angenehme und ertragreiche Zeit am Institut Chiari.

Nachzulesen auf der Webseite der Französischen Nationalversammlung eine Anfrage des Abgeordneten M. Marc Bernier an Roselyne Bachelot-Narquin, Ministerin für Gesundheit, Jugend und Sport, veröffentlicht am 02.03.2010.

In besagter Anfrage, stellt Herr M. Marc Bernier fest, dass es in Frankreich keine medizinische Einrichtung zur Heilung des Arnold Chiari Syndroms gibt, eine Krankheit die eine beeinträchtigende Symptomatik mit sich bringt, wie unerträgliche Kopfschmerzen, chronische Müdigkeit und Atmenot. Ferner merkt er an, dass französische Ärzte einzig schmerzlindernde, medikamentöse Therapien verschreiben, ein recht beschränkt wirkungsvolles Heilverfahren. In den USA und in Spanien (nur das Institut Chiari de Barcelona) wird ein operatives Verfahren angeboten, das in der chirurgischen Durchtrennung des Filum Terminale besteht, und zu spektakulären Ergebnissen geführt hat. Schließlich fordert er die französichen Krankenkassen auf, entweder die Kosten dieses Eingriffs in Barcelona zu übernehmen oder eine vergleichbare Alternative in Frankreich anzubieten.

Hier können sie den Originaltext auf Französisch lesen: https://questions.assemblee-nationale.fr/q13/13-73107QE.htm

Am 6. Mai 2010 haben wir unseren ersten Patienten aus China operiert. Bisher haben wir Patienten aus 18 verschiedenen Ländern operiert.

The document is now available: II Reunión para pacientes. Roma. Italia

The reunion in Rome has been of great success in assistance. Dr. Gioia Luè presented the results of her investigations on the quality of life during the post-surgery after the section of the filum terminale, and Dr. Royo Salvador presented to the ones who did not now about it, his treatment to stop the diseases such as Arnold Chiari I, Syringomyelia and Scoliosis. He has also mentioned his new complementary medical treatment and physiotherapy treatment, which are resulting efficient. Between the conference novelties, the „Chiari & Scoliosis & Syringomyelia Foundation“ must also be brought out. The foundation will continue contribute with all its effort for the investigation, public health and teaching for patients and doctors. It is important to mention the big demand for assistance to this event to the point of having to move to a bigger auditorium. After the reunion we have received many congratulations for the organization of the act through many messages and phone calls from patients. We are very glad that the conference has been of help to them and we hope to be able in the future to repeat these events in different countries. At the end of the reunion we have awarded patients and/or family members that help other petients with great enthusiasm and willingness. Sponsors: Rita Presbulgo y Angelo Donzelli Patroness: Elena Degl’Innocenti Collaborators: Estelle Lussiana Pietro Gigliola Cristiana Cattarruzza Francesco Crocè Monica Bacci Francesco Mauro Caterina Ravelli Angelo Sabatelli Athos Piccinini Sergio Maldini Fatima Giordano Rosalia Mocciaro Franceso Mazzieri Irene Mazzieri

Now, various authors and specialized institutes in Arnold Chiari and Syringomyelia in Europe and EEUU show their interest in the role of the filum terminale and the surgical section in the new paradigm theory and methodology of these diseases. We want to remind that the ICSEB possesses the honor of having as a surgical team director; the neurosurgeon who 17 years ago described the transcendental role of the filum terminale as a solution to these pathologies, Dr. M. B. Royo Salvador. Thanking him for his precious and fundamental contribution to the medical science, we wish for him to carry on with his scientific and human investment to help and cure many patients. The ICSEB team.

The statistics applied to the surgical treatments reveal results, which in many occasions must make us modulate our way of reacting.

In the consent sheet it is informed and admitted with the intervention of the Arnold Chiari I Sindrome and Sub-occypital Craniectomy, that there is a 0.5-3% death rate. Meaning, the death of a patient between 200 operated or three patients between 100 operated is admitted and admissible.

The natural mortality rate of the Arnold Chiari I Sindrome from the proper illness; „sudden death“ is not statistically established but can be according to our statistics between one death of every 500 patients in fifteen years.

In other words, they are treating patients suffering from Arnold Chiari I Sindrome by means of a sub-occypital craniectomy with a higher mortality rate than its natural evolution. Whereas with the section of the filum terminale, which has proved in 134 operated patients of Arnold Chiari I Sindrome the elimination of the cause, the mortality rate and morbility is 0%.


Dr. Royo Salvador


Reference link: https://www3.lastampa.it/torino/sezioni/cronaca/articolo/lstp/8091/

I am very worried with the indications, comments and type of interventions that are being applied to patients with Syringomyelia in countries like Italy and France and which have started to apply the section of the filum terminale. Here I have a part of the recent consultation done through e-mail of an Italian patient suffering from traumatic Syringomyelia where neither the section of the filum terminale nor the drainage of the Syringomyelic cavity are indicated, including the linguistic argot: „dopo un peggioramento da circa 1 anno e mezzo, il dottore della mia città vorrebbe farmi altro drenaggio, un’altra eqipe di Firenze.. invece vuole farmi la resezione del filum! x via intradurale..senza però garantirmi nulla sul esito..e cmq un’operazione di certo invasiva..mah!“ „after a year and a half of worsening, the doctor from my city wanted to practice on me another drainage, meanwhile, the team in Florence wanted to practice the section of the filum terminale! through via intradural, without any guarantee of good results…and besides it would be an invasive intervention…gosh!“ The worsening in this case is due to the presence of an evident herniated disc in C3-4, which has not been taken in consideration by the different consulted specialists. On the other hand there is a team in the Kremlin-Bicêter Hospital that practiced two interventions of the section of the filum terminale on two patients with Syringomyelia with no valid surgical criteria. The insults they uttered to us such as: „charlatan“ came from this precise hospital some months ago according to a patient operated with the SFT. What also worries me is the mercantilist aspect of a French professional inexperienced in these pathologies, which before operating the first case, they already have proposed economic offers to people who consider themselves legitimated to direct groups of patients with different interests in the correct medical praxis. The saddest news we received was from Italy when the sectioning of a nerve at the intradural lumbar level was done when trying to practice the section of the filum terminale. The proposed section of the filum terminale for the treatment of various neurological illnesses, which constitute the new NeuroCraneoVertebral Sindrome, is effective when a cautious selection of patients is made; in the presence of many factors, such as the correct indication or the contraindication for the intervention. Besides, it is precise to have a special post-operation control and the patient’s collaboration to understand the objectives of the operation and the future results. Since these successful interventions could end up with a negative result without doing this Psycho neurological control when it is actually positive, especially with the complex clinical setting and the frequent disapprobation and insults uttered by some uninformed and malicious professionals. The indications and contraindications of the NeuroCraneoVertebral Sindrome, which forms part of the Syringomyelia are reflected in the different publications and its fundamentals in the understanding of the whole explanation from the doctoral thesis up until the last publication (see the bibliography in the INB and ICSEB webpage). We are updating all this criteria from the discovering of new pathologies related with new signs and symptoms. Confirming some in the form of a doctoral thesis and others in publications with investigative studies sponsored by the „Chiari & Scoliosis & Syringomyelia Foundation“. Dr. Royo Salvador