A verdict confirms our minimally invasive technique of the Sectioning of the Filum Terminale, included in our Filum System® method, as the treatment of excellence for children with Arnold Chiari I Syndrome, in contrast to the indication of the sub-occiptital craniectomy.
Mrs. Chiara is David’s mother, a young Italian patient who underwent surgery with Dr. Royo in 2007.
She starts her personal blog with a letter that, as she explains, she sent to newspapers and some TV stations without receiving any reply. In this letter she talks about everything she has been through, from the discovery of her son’s disease up to the sectioning of the filum terminale surgery with extremely positive outcomes.
Apart from the personal experience reflected in Chiara’s testimony there is an expert report by a medical expert that objectively describes and analyses David’s clinical case, all this within the framework of a legal process that the child’s parents started against the social security entity of their region.
The final verdict confirmed in 2011 their right to be reimbursed for the surgery’s cost by the Italian health service, due to choosing the most adequate and least risky surgery that could be indicated for their child, even though it would be performed outside their country and despite all the difficulties they encountered at their national hospitals in order to get the patient referred to Barcelona.
We here below quote some excerpts of Chiara’s Blog, which you can visit by following the link, and we also add a partial translation of the expert report and the original verdict, attached in Italian.
David’s clinical and legal case reasserts the position of our Institut Chiari de Barcelona as a worldwide reference for diseases related to the Arnold Chiari I Syndrome and the importance of the application of Sectioning of the Filum terminale as the first choice for those diagnoses, and the reality of the excellent outcomes of our method which is evident in the improvement of our patients’ life quality.
We are grateful to Chiara and her family for their readiness to publish the legal documents and their cooperation in helping other patients, we are sure that this antecedent will be important for many others.
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Chiara’s blog – Excerpts (Source in 2013: https://chiarar77.myblog.it/)
“David wasn’t well then, he would fall over often, as well when he was being still, he didn’t talk, in spite of his keenness to communicate and giving off a lot of sounds, they just wouldn’t come out. He was touching his legs a lot, the joints… you could see that he was suffering! During his seizures it seemed as if he was hallucinating, as if he was feeling strange sensations and was seeing something that made him scared…”
“…They performed a new electroencephalogram in critical stage, and the neurologist told me that one could now speak of epileptic crises. “
“The neurologist then decided to prescribe a drug treatment for David and ordered a magnetic resonance of the brain for the following month (February 2007)…”
“…The resonance report stated that David had a “white” area that was defined as “myelinisation” that is normal and that showed “ a herniation of the cerebellar tonsils of approximately 7mm”. The neurologist said that it was a perfect resonance, that the child was as healthy as a horse, that there were no spots that justified those epileptic crises, and that with time everything would pass…”
“Well, so the time of the appointment had come and the final opinion was that the same magnetic resonance that had been done in February 2007 in Ferrara showed a rare brain malformation called Arnold Chiari I Syndrome (a descent of 7mm of the cerebellar tonsils), and as David was to old for his brain to be still in myelinisation stage, they defined that area as a “brain ischemia”…”
“…Nevertheless they told me that it was my fault that my son’s test results were altered, that it was my fault that he didn’t eat. They said that it was my fault that he didn’t speak, because I did not give him a chance to do so, that I was already ahead of him, that I was too possessive…”
After that they talked to me about a brain surgery, first about “decompression”, and afterwards, if it wasn’t successful, even of a “open” brain surgery…”
“The Arnold Chiari I Syndrome consists in a descent of the cerebellar tonsils trough the foramen magnum. This blocks the circulation of the cerebrospinal fluid causing a compression inside the brain that can also trigger crises similar to epileptic ones.”
“After the first moments of desperation, I “sharpened my fingernails” and went on the Internet in search of news regarding this malformation and the possible solutions. Until I found in a forum a comment by a young man who had recently been operated in Barcelona (in Spain). A new surgery, non-invasive and that required only 24 hours at the hospital. He left his mobile phone number for more information.”
“…Once all the tests had been done, I tried to find out information about the different laws regarding reimbursement and authorization for the surgery. I was completely decided to go ahead with this kind of surgery, the sooner, the better.”
“In Italy, the decompression surgery would have been performed when the patient’s condition was already critical, meaning, when it had become inevitable and the pain management treatments wouldn’t suffice anymore.
“On top, the decompression could cause complications, as occurred many times, and the symptoms from before the surgery did not go away afterwards anyway. If it went well it could only be avoided that things got worse. But one could still keep on getting worse and it could be the case that the decompression surgery would have to be repeated more than once, or even move onto a “open skull” surgery.”
“The Sectioning of the filum terminale surgery (the one performed by Dr. Royo in Barcelona) guaranteed, other than bringing the disease to an hold, in some cases also de regression of the symptoms (depending on age and the elasticity of the tissues)…”
“…I believe with all my heart in Dr. Royo’s surgery, and I believe that any mother in my shoes, would choose to try this one before allowing that someone touches her own son’s encephalon. So I decided to go to Barcelona, I prepared the suitcases and left…my mother came with me, and also Thomas was there. “
“ The pre-operative appointment was on 1 October 2007. I thought that Dr. Royo was very very nice, but at the moment I was worried for David. On the next day, 2 October, he operated on him…the procedure lasted approximately for an hour. As he was a small child (the youngest to be operated up to that date), they had to give him general anaesthesia. When the surgery was over, Dr. Royo called us to tell us that David had a very dense and tight filum. He also showed us the pictures. The surgery went well and he assured us that everything would return to be normal, that David would be okay and that he would grow up just as every other child. Also the epileptic seizures would pass and even the ischemia would resolve. My mother and I started to cry and hugged him! We then went back to the room, where David was waiting for us already awake with a nurse. I will never forget that moment, I saw my boy with a wonderful colour, not the usual paleness after a general anaesthesia, but a rosy and reddish colour as I had never seen it before. They told me that this was normal because the circulation worked again the way it should. Something else that impressed me was observing how he looked at and touched his little hands, as if he was feeling them for first time. As a matter of fact this disease can cause insensitivity and numbness. Seeing him like this was like being reborn! That afternoon, when he woke up completely from the anaesthesia, he wanted to get up and play with his toy cars. Since then he has NEVER AGAIN fallen over. It was unbelievable, possible it still is, but my child has never again had any balance problems. The next morning, in the first check up upon discharge, they told us that other neurological signs had improved. I was very happy! If I had the chance I would build a monument in Dr. Royo’s honour. Another thing that I would like to point out is that I encountered doctors and nurses in Barcelona that we can only dream of in Italy, with a special kindness and understanding, without leaving aside Dr. Royo’s professionalism and humbleness. They advised also to wait until the end of 2007 and to then, in agreement with our neurologist, lower the dosage of the medication for the epileptic seizures. Seizures that anyhow were not due to the foci, but the compression that had been building up in David’s brain, and they were independent from the pharmaceutical treatment. When the seizure came about, it appeared and that was it.”
“After the discharge we stayed on in Barcelona for two days to spare David an immediate journey of two hours on the airplane. And with him being such a small child, I preferred it this way anyway. We were staying in a hotel two minutes from the hospital, and if necessary, we would have been able to be there in a couple of minutes. The days following the surgery were a constantly confirming the validity of our choice. David was getting better and better, he wasn’t touching his joints anymore, he didn’t complain, he ran without falling: he wasn’t falling over!”
“David stopped the medication. The neurologist in Ferrara said that two years without seizures would have to go by before dropping the medication, but in February she saw in his blood test that his kidney was starting to suffer, and in agreement with my father, she decided to gradually reduce it. “
“Since 1 February 2008 David isn’t taking the full treatment anymore, … and, he totally stopped it on 1 May 2008. He hasn’t had any seizures for a year. He is doing speech therapy, and he is gradually starting to pronounce some words. He has never fallen over again, nor has he complained about pain or headaches. A physiotherapist, who said that he was a boy who did not need physiotherapy, because all his functions are developed adequately for his age, has also seen him. He is very strong and very lively…”
“…We were outside the house the other day, in the backyard of our building, and David was playing with some twin from the neighbourhood. He was running for two hours, without stopping and he never fell. It has been a unique satisfaction to see my child like this.
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Documento original: https://institutchiaribcn.com/commons/pdf/comunicados/consulenzamedicolegale.pdf
Ferrara Court
File 914/9, Trib.Lav. Ex. r.g. 2656/09 Trib. Ord.
Medical expert appraisal
“…In the assessed case there have surely been objective difficulties, partly due to the case’s intricacy (because of the numerous neurological symptoms), partly due to a lack of immediate interpretation of the neuroradiological data: at the time of the first MRI the malformation was already evident. The subsequent neurological study, with the observant reading of the specialists from Ferrara, the final diagnosis was reached, and concomitantly the immediate suggestion to correct the malformation…(by means of sub-occipital craniectomy).
“ …the surgery that was proposed in order to correct the progressive descent of the cerebellar tonsils into the Foramen Magnum would be focussed exclusively in the posterior cranial fossa, with an opening of the posterior wall of the Foramen Magnum (extraction of the final part of the occipital bone) and, at times, also of the posterior arch of the first vertebra), opening of the dura mater and plasty (joining biocompatible tissue) in order to create a bigger cisterna magna. In some cases a coagulation of the cerebellar tonsils can be necessary, due to the need to enlarge the space available for the cerebellar mass.
“An clearly complex surgery, which nevertheless is applied routinely in specialist environments, also in the patient’s region.
“In the case regarding little David however, some important elements stand out.”
“On the one hand there is a family, affected deeply by the neurologic suffering of the child, manifesting a rapidly deteriorating symptomatology…; on the other hand, there are surgeons that suggest the necessary posterior cranial fossa decompression surgery, with the doubts regarding the prognostic in the case of a patient with cerebral lesions.
“In short, in August 2007 the tests showed a hypoxic ischemic cerebral pathology that consisted in alterations of the frontal profound parasagittal white matter, more pronounced in the posterior ventricular trigone.”
“At the same time, the study of the posterior cranial fossa showed a slenderness of the pathologically into the foramen magnum by at least 5mm descended cerebellar tonsils (Arnold Chiari Syndrome Type I) with absence of an syringomyelic cavity and a normally positioned conus medullaris at the level of the L1-L2 segment of the lumbar spine.
“It is clearly understandable that the parents given such an important situation have asked for and obtained a time period to think before having their little sine undergo such a complex neurosurgical procedure. The finding of a serious alternative to the decompression surgery is related to the experiences that some expert groups from the USA and Europe are collecting since some years, that, based on the knowledge that the Arnold Chiari I Syndrome in children is associated to a pathological traction on the spinal cord from below, they eliminate the supposed (or visible) traction with a simple procedure to section the filum terminale.”
“This method is unknown in Italy, to a point that in some neurosurgical clinics with a specialty in paediatrics, the sectioning of the filum is applied as an addition to the decompression of the posterior cranial fossa in order to improve the outcomes of the surgery (…). However, this additional method implies the opening of the lumbosacral spine, the opening of the dural sac and the sectioning of the filum.”
The excellence of the surgery performed in Barcelona consists in carrying our a sectioning of the filum terminale, equally effective, by means of a simple sacrum approach, minimally invasive, with local anaesthesia.”
“In a child with a picture of neurological suffering as with little David, it surely seems to be the procedure of first choice. A lack of success after a surgery of such modest repercussion, would only lead to a delay of few days before facing the risky decompression; to choose the other .way around however would involve a higher risk
“We shall consider the MRI from 12.11.2008 as a post-operatory control test. The surgery carried out in Barcelona on the date 2.10.2007 consisted in sectioning the Filum Terminale of the conus medullaris, with non-invasive technique as described before, performed at sacrococcygeal level. There are no substantial iconographic differences neither in extension nor in the intensity of the cerebral suffering depicted in the ischemias; there are no traces of complications at the sacrum level in the area of the surgical site, but there is a notable improvement in the morphology of the cerebellar tonsils that appear rounded and ascended to the posterior cranial fossa level, as normal.
“The CTU (“Officially designated technical consultant” in Italian initials) therefore believes that the surgery performed at the private clinic Institut Chiari & Siringomielia & Escoliosis de Barcelona would not have been performed in the national environment, because this technique is not known, that is it is not being performed.”
“The child could have received treatment also on national and regional territory, with different surgeries and modalities and with a much higher risk percentage. The outcome of the surgery provided closure for the pathology that was intended to correct (the Arnold Chiari I malformation) with a total healing in the images.”
“Even setting aside the good outcome I believe that the choice of surgery of the Sectioning of the Filum Terminale (instead of the a decompression of the posterior cranial fossa) is in this particular case completely justified and legitimate as the first surgical choice, reaffirming that, in spite of being known in Italy as an addition to the decompression surgery, the minimally invasive surgery of the colleagues in Barcelona was obviously the most indicated one due to its extreme tolerability and the absence of complications.”
“I furthermore find the recorded expenses, met by little David’s parents and relatives for in order to have the surgery, completely congruent.”
…
Modena, 20 May 2011
Dr. Elio Torcia
Neurosurgery Department
Hospital NOCSAE Baggovara
Modena
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Oringal document: https://institutchiaribcn.com/commons/pdf/comunicados/sentencia.pdf
Verdict (SENT. N. 214/11- Tribunale di Ferrara)
“Dr. Alessandra de Curtis, Labour Judge, has pronounced the following VERDICCT in for the hearing of the oral discussion of 1 July 2011 in case n. 914/2009 R.G, claim
BY
“Ran Chiara and Pigozzi Giovanni as holder of the custody for Pigozzi David….”
AGAINST
“The “Azienda USL” of Ferrara (Italian Social Security)…..”
SUBJECT: reimbursement of medical expenses
…….
“The medical expert appraisal issued has confirmed that the minor had been carrier of a complex syndrome of neurologic suffering since birth, characterised by convulsive seizures, delayed motor development and Arnold Chiari I malformation; it has also evidenced that the surgical method, developed in the foreign centre, of minimally invasive type, is especially indicated exactly for patients of paediatric age, is not performed in Italy but as an addition to the more drastic and invasive surgery (as described in the appraisal). It has proved to be efficient in the minor who has shown an obvious improvement… The outcome of the surgery has provided closure for the disease that was intended to be corrected… “
“So the claim is accepted…”
“The relevance of the fundamental and primary subjective right to health has to be emphasized…”
The Judge accepts the motion and pertinently sentences the Health System to pay the plaintiff in effective balance the totality of the cost plus legal charges of the claim.
The Institut Chiari & Siringomielia & Escoliosis de Barcelona will remain closed on June 5th 2017 due to a local holiday.
We are pleased to announce that the director of Institut Chiari & Siringomielia & Escoliosis de Barcelona Dr. Royo Salvador, has been invited to collaborate with the association Worldwide Syringomyelia & Chiari Task Force and to join the medical board of this association that is based in the United States. It aims to educate professionals and patients about the diagnoses that included in the organization’s name.
We would like to inform you that Institut Chiari will remain closed from the afternoon of Thursday 24 of March until Monday 28 of March, due to the Easter holidays.
Since June 2015, the Institut Chiari & Siringomielia & Escoliosis de Barcelona counts on the experience of Dr Horia Salca Calín. He is the new member of the medical-surgical team of ICSEB, a neurosurgeon trained in all conventional techniques of neurosurgery and is accredited for the implementation of the Filum System® Surgery method. Also, he is the part of the Department of Research and Development of the Institut.
Link of the news: https://france3-regions.francetvinfo.fr/haute-normandie/eure/guerie-en-espagne-laurence-se-bat-pour-etre-remboursee-par-la-securite-sociale-929483.html
News summary:
Laurence Guillois. Arnold Chiari I syndrome. Idiopathic scoliosis, Multiple discopathy.
Françoise Simon. Syringomyelia and idiopathic scoliosis. Multiple discopathy.
Emmanuelle Tarquini, Arnold Chiari I syndrome, Idiopathic scoliosis.
The patients Laurence Guillois, Françoise Simon and Emmanuelle Tarquini are fighting to be reimbursed by the French social security and to get the surgical procedure recognized, which as per their comments, saved t heir lives.
The patient Laurence Guillois said that she started to have several symptoms that limited her physical activity and consequently had to quit her job as a company director. Very desperate, and after being rated as inoperable by the neurosurgery department in France, she began to seek new horizons to solve her problem. One day she found online information about the surgery of the sectioning of the filum terminale, a surgical treatment that is exclusively applied at the Institut Chiari & Siringomielia & Escoliosis de Barcelona in the case of her diagnosis.
Laurence did not hesitate and decided to go to Barcelona for the surgery and as a result she noted significant improvements immediately after the surgery.
Currently, she is trying to get her expenses of the surgical process reimbursed by the French social security. However, to achieve this, the high level health authorities in France need to recognize the process of diagnosis and treatment according to the protocol of the Filum System®, which so far has not been achieved despite being questioned by thirteen members of the Assemblée Nationale at different occasions for five years.
The Institut Chiari & Siringomielia & Escoliosis de Barcelona will remain closed on February 12th 2015 due to a local holiday.
The Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB) works with patients from all over the world. 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.
We would like to communicate that at the “Institut Chiari & Siringomielia & Escoliosis de Barcelona” we have resumed our normal activities on 7th of January 2016.
Making most of the arrival of the New Year 2016, we, at Institut Chiari & Siringomielia & Escoliosis de Barcelona, are developing an entirely new look of our website. This new version is adapted to the latest technologies, including new features to enhance the user experience. Note that the new website will be “responsive” and optimized for mobile devices.
Here is the summary of some of the salient features:
New welcome page, where you will find the description of the major diseases we treat, as well as recent testimonials from our patients, important news, upcoming events and popular science publications.
Simplified navigation, the new website will have a new restructuring of sections for the easy access to contents.
Our objective: we want it to become a benchmark, accessible and available to all patients for information.
Download in PDF
Lublin, Poland.
Site of the IX CSSf meeting.
Reception of participants.
Mrs. Mara Espino, Mrs. Katarzyna Górka, Mrs. Gioia Luè.
Ms. Barbara Wróblewska, collaborator with the CSSf in Poland, and Dr Miguel B.Royo Salvador.
Introduction by Prof. Krzysztof Turowski.
Presentation by Dr. Miguel B. Royo Salvador, neurosurgeon and neurologist.
Presentation by Mrs Gioia Luè, clinical psycholgist.
Session on clinical cases, Dr. Paweł Szmygin.
Question time.
Prof Krzysztof Turowski is presented with the CSSf’s honorary collaborator diploma.
Here at the Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB), we would like to introduce our contact person for Japanese patients.
At the Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB), we soon realised that we could not live with our back to the Russian Federation. This is why Olga Lobanova, a contact person who left an important mark at the ICSEB and who would be an entrance gate for this great nation, so near as distant at the same time, joined the team in 2008.
Throughout my life as a researcher, I often wondered about the characteristics that would be required of the specialists that would join the Project and make their own the scientific, technical as well as care-related advances involved in a method such as the Filum System®.
Barcelona, 1 March 2014.
