{"id":83233,"date":"2013-10-09T00:00:35","date_gmt":"2013-10-08T22:00:35","guid":{"rendered":"https:\/\/dev.institutchiaribcn.com\/comunicacion\/a-verdict-confirms-our-filum-system-method-and-our-institut-as-a-worldwide-reference\/"},"modified":"2026-02-25T11:36:28","modified_gmt":"2026-02-25T10:36:28","slug":"a-verdict-confirms-our-filum-system-method-and-our-institut-as-a-worldwide-reference","status":"publish","type":"comunicacion","link":"https:\/\/institutchiaribcn.com\/en\/a-verdict-confirms-our-filum-system-method-and-our-institut-as-a-worldwide-reference\/","title":{"rendered":"A verdict confirms our Filum System\u00ae method and our Institut as a worldwide reference."},"content":{"rendered":"

Published by\u00a0ICSEB<\/a>\u00a0at 9 October, 2013<\/p>\n

 <\/p>\n

A verdict confirms our minimally invasive technique of the Sectioning of the Filum Terminale, included in our\u00a0<\/strong>Filum System\u00ae method, as the treatment of excellence for children with Arnold Chiari I Syndrome, in contrast to the indication of the sub-occiptital craniectomy.\u00a0<\/strong><\/p>\n

Mrs. Chiara is David\u2019s mother, a young Italian patient who underwent surgery with Dr. Royo in 2007.<\/em><\/p>\n

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\u2019s disease up to the sectioning of the filum terminale surgery with extremely positive outcomes.<\/em><\/p>\n

Apart from the personal experience reflected in Chiara\u2019s testimony there is an expert report by a medical expert that objectively describes and analyses David\u2019s clinical case, all this within the framework of a legal process that the child\u2019s parents started against the social security entity of their region.<\/em><\/p>\n

The final verdict confirmed in 2011 their right to be reimbursed for the surgery\u2019s 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.<\/em><\/p>\n

We here below quote some excerpts of Chiara\u2019s 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.<\/em><\/p>\n

David\u2019s 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\u2019 life quality.<\/em><\/p>\n

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.<\/em><\/p>\n

\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014<\/p>\n

Chiara\u2019s blog \u2013 Excerpts (Source in 2013:\u00a0<\/strong><\/em>https:\/\/chiarar77.myblog.it\/)<\/strong><\/p>\n

\u201cDavid wasn\u2019t well then, he would fall over often, as well when he was being still, he didn\u2019t talk, in spite of his keenness to communicate and giving off a lot of sounds, they just wouldn\u2019t come out. He was touching his legs a lot, the joints\u2026 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\u2026\u201d<\/p>\n

\u201c\u2026They performed a new electroencephalogram in critical stage, and the neurologist told me that one could now speak of epileptic crises. \u201c<\/p>\n

\u201cThe neurologist then decided to prescribe a drug treatment for David and ordered a magnetic resonance of the brain for the following month (February 2007)\u2026\u201d<\/p>\n

\u201c\u2026The resonance report stated that David had a \u201cwhite\u201d area that was defined as \u201cmyelinisation\u201d that is normal and that showed \u201c a herniation of the cerebellar tonsils of approximately 7mm\u201d. 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\u2026\u201d<\/p>\n

\u201cWell, 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 \u201cbrain ischemia\u201d\u2026\u201d<\/p>\n

\u201c\u2026Nevertheless they told me that it was my fault that my son\u2019s test results were altered, that it was my fault that he didn\u2019t eat. They said that it was my fault that he didn\u2019t speak, because I did not give him a chance to do so, that I was already ahead of him, that I was too possessive\u2026\u201d<\/p>\n

After that they talked to me about a brain surgery, first about \u201cdecompression\u201d, and afterwards, if it wasn\u2019t successful, even of a \u201copen\u201d brain surgery\u2026\u201d<\/p>\n

\u201cThe 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.\u201d<\/p>\n

\u201cAfter the first moments of desperation, I \u201csharpened my fingernails\u201d 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.\u201d<\/p>\n

\u201c\u2026Once 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.\u201d<\/p>\n

\u201cIn Italy, the decompression surgery would have been performed when the patient\u2019s condition was already critical, meaning, when it had become inevitable and the pain management treatments wouldn\u2019t suffice anymore.<\/p>\n

\u201cOn 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 \u201copen skull\u201d surgery.\u201d<\/p>\n

\u201cThe 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)\u2026\u201d<\/p>\n

\u201c\u2026I believe with all my heart in Dr. Royo\u2019s surgery, and I believe that any mother in my shoes, would choose to try this one before allowing that someone touches her own son\u2019s encephalon. So I decided to go to Barcelona, I prepared the suitcases and left\u2026my mother came with me, and also Thomas was there. \u201c<\/p>\n

\u201c 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\u2026the 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. \u00a0Something 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\u2019s 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\u2019s 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\u2019s brain, and they were independent from the pharmaceutical treatment. When the seizure came about, it appeared and that was it.\u201d<\/p>\n

\u201cAfter 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\u2019t touching his joints anymore, he didn\u2019t complain, he ran without falling: he wasn\u2019t falling over!\u201d<\/p>\n

\u201cDavid 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. \u201c<\/p>\n

\u201cSince 1 February 2008 David isn\u2019t taking the full treatment anymore, \u2026 and, he totally stopped it on 1 May 2008. He hasn\u2019t had any seizures for a year. He is doing speech therapy, and he is gradually starting to pronounce some words.\u00a0 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\u2026\u201d<\/p>\n

\u201c\u2026We 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.<\/p>\n

\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014<\/p>\n

Documento original:\u00a0https:\/\/institutchiaribcn.com\/commons\/pdf\/comunicados\/consulenzamedicolegale.pdf<\/a><\/strong><\/p>\n

Ferrara Court<\/strong><\/p>\n

File 914\/9, Trib.Lav. Ex. r.g. 2656\/09 Trib. Ord.<\/strong><\/p>\n

Medical expert appraisal<\/strong><\/p>\n

\u201c\u2026In the assessed case there have surely been objective difficulties, partly due to the case\u2019s 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\u2026(by means of sub-occipital craniectomy).<\/p>\n

\u201c \u2026the 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.<\/p>\n

\u201cAn clearly complex surgery, which nevertheless is applied routinely in specialist environments, also in the patient\u2019s region.<\/p>\n

\u201cIn the case regarding little David however, some important elements stand out.\u201d<\/p>\n

\u201cOn the one hand there is a family, affected deeply by the neurologic suffering of the child, manifesting a\u00a0rapidly deteriorating<\/strong>\u00a0symptomatology\u2026; 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.<\/strong><\/p>\n

\u201cIn 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.\u201d<\/p>\n

\u201cAt 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.<\/p>\n

\u201cIt 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.\u201d<\/p>\n

\u201cThis 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 (\u2026). However, this additional method implies the opening of the lumbosacral spine, the opening of the dural sac and the sectioning of the filum.\u201d<\/p>\n

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.\u201d<\/p>\n

\u201cIn 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<\/p>\n

\u201cWe 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\u00a0notable improvement<\/strong>\u00a0in the morphology of the cerebellar tonsils that appear rounded and ascended to the posterior cranial fossa level,\u00a0as normal<\/strong>.<\/p>\n

\u201cThe CTU (\u201cOfficially designated technical consultant\u201d 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\u00a0this technique is not known, that is it is not being performed<\/strong>.\u201d<\/p>\n

\u201cThe 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.\u201d<\/p>\n

\u201cEven 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.\u201d<\/p>\n

\u201cI furthermore find the recorded expenses, met by little David\u2019s parents and relatives for in order to have the surgery, completely congruent.\u201d<\/p>\n

\u2026<\/p>\n

Modena, 20 May \u00a02011<\/p>\n

Dr. Elio Torcia<\/strong><\/p>\n

Neurosurgery Department<\/strong><\/p>\n

Hospital NOCSAE Baggovara<\/p>\n

Modena<\/p>\n

\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014\u2014<\/p>\n

Oringal document:\u00a0https:\/\/institutchiaribcn.com\/commons\/pdf\/comunicados\/sentencia.pdf<\/a><\/strong><\/p>\n

 <\/p>\n

Verdict (SENT. N. 214\/11- Tribunale di Ferrara)<\/strong><\/p>\n

\u201cDr. 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<\/p>\n

BY<\/strong><\/p>\n

\u201cRan Chiara and \u00a0Pigozzi Giovanni as holder of the custody for Pigozzi David\u2026.\u201d<\/p>\n

AGAINST<\/strong><\/p>\n

\u201cThe \u201cAzienda USL\u201d of Ferrara (Italian Social Security)\u2026..\u201d<\/p>\n

 <\/p>\n

SUBJECT:<\/strong>\u00a0reimbursement of medical expenses<\/p>\n

\u2026\u2026.<\/p>\n

\u201cThe 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,\u00a0is not performed in Italy but as an addition to the more drastic and invasive surgery\u00a0<\/strong>(as described in the appraisal). It has proved to be efficient in the minor who has shown an obvious improvement\u2026 The outcome of the surgery has\u00a0provided closure for the disease<\/strong>\u00a0that was intended to be corrected\u2026 \u201c<\/p>\n

\u201cSo the claim is accepted\u2026\u201d<\/p>\n

\u201cThe relevance of the fundamental and primary subjective right to health has to be emphasized\u2026\u201d<\/p>\n

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.<\/p>\n","protected":false},"featured_media":0,"template":"","tipos-de-comunicacion":[512],"class_list":["post-83233","comunicacion","type-comunicacion","status-publish","hentry","tipos-de-comunicacion-news-announcement"],"yoast_head":"\nVerdict confirms Filum System\u00ae method & institute | ICSEB<\/title>\n<meta name=\"description\" content=\"A legal verdict confirmed the Filum System\u00ae for Chiari\u202fI, establishing ICSEB as a worldwide reference with excellent patient outcomes.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/institutchiaribcn.com\/en\/a-verdict-confirms-our-filum-system-method-and-our-institut-as-a-worldwide-reference\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" 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