San Giovanni in Fiore, 31th May 2019

31th May is a special day for me. I could say it is my ninth birthday because nine years ago I was born again. Today, I want to send a special thanks to those who improve people’s lives every day, as it has happened to me. After nine years, I can say that there are exceptional people in the world, such as Dr. Miguel B. Royo Salvador, Miss Gioia Luè, the entire team of the Institut Chiari de Barcelona (Spain) and the members of the association AI.SAC.SISCO Onlus (Italy). They brought me back to life, giving me the strength to be reborn and smile again.
Thank you with all of my heart because if today I can write my story, it is because I owe it all to my adored Dr. Miguel B. Royo Salvador. I will never stop thanking him for what he did for me because, without his help, I would not have been here for years.
Dear Doctor, I will always carry you in my heart and I will always thank you for what you did for me. Thank you for existing!
Maria Pia Ambrosio

 

The Institut Chiari & Siringomielia & Escoliosis de Barcelona would like to point out the risks of trusting imprudent health care professionals.

 

There is a multitude of information circulating in the professional domain as well as in communication channels that, if on the one hand it offers different perspectives, on the other, it can complicate understanding and decision making. Medical and health professionals have a responsibility commitment to the sick, to transfer information as clear and exhaustive as possible, to allow them to make the most appropriate decisions about their own health.
The Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB) promotes education and the dissemination of knowledge, being aware that all this affects the patients’ decisions about her/his health and safety. It is on that account that we have prepared this open letter.
We would like to alert about the possible risks of relying on professionals who do not act with due prudence when offering a surgical treatment that they claim is the same as the one practiced by our team. As a matter of fact, they do not have the necessary knowledge nor the experience to achieve our excellent results.
This warning arises due to a misunderstanding about the treatment offered by our Institute. Some people mistakingly believe that the most transcendent aspect of our work is the type of surgical procedure that we perform. However, what is most paramount is to have discovered a new disease, which affects the entire human nervous system: the Filum Disease.
The research carried out by Dr. M. B. Royo-Salvador, ICSEB’s director, has linked together the Arnold-Chiari Syndrome Type I, idiopathic Syringomyelia and Scoliosis and other diseases in a single concept: the Filum Disease. Dr. Royo-Salvador is one of the most prolific authors on these diseases.
The mentioned diseases share the same cause: an abnormal tension of the filum terminale. The Filum Disease affects the spine, the skull and the central nervous system, causing pain throughout the body, changes in sensitivity to temperature and touch, lack of strength in the extremities, fatigue, dizziness, instability, even including alterations of the memory and concentration, and it has a wide range of symptoms and signs. Its consequences can be irreversible.
It is true that the design of an exclusive health method that includes a minimally invasive surgical technique has been a step that saves lives, as it allows us to eliminate the cause of the disease, as well as mortality and morbidity rates of conventional treatments. But it is essential to clarify that this surgical technique is A PART of the health method, which we have developed and that encompasses a series of protocols, which must be respected rigorously.
To offer our treatment correctly, the medical team to apply it needs to know how to correctly diagnose and know what kind of treatment should be applied. Then, it needs to know how to apply it with the best surgical techniques and know how to accompany each case, in a personalized way, for many years.

As you can see the word TO KNOW is repeated in all stages, and that is not a coincidence. To achieve the development of the treatment we offer today, it has been necessary to know, and a great deal! It took more than 40 years of research, which is still ongoing, since our Institute, in addition to seeing patients from more than 75 countries, is the only one in Europe recognized for its research and development of the diseases that we treat, holding the I + D + i accreditation by the Certification Agency in Spanish Innovation (ACIE).
ICSEB has furthermore gained the recognition of innovation by listed in the Spanish Registry of “Innovative SME” of the Ministry of Economy, Industry and Competitiveness; the new “Certification ISO 9001: 2015 (IQNet and AENOR)”, in the activities of research, diagnosis and treatment of the Filum Disease and also in the diagnosis and treatment of neurosurgical diseases.
One of the results of the constant effort to consolidate the protocols and quality standards is the satisfaction rate among operated patients, which is 94.2%, with excellent subjective clinical and surgical results. Likewise, in February 2019, Dr. Miguel B. Royo-Salvador has been distinguished as a member by the Academy of Health Sciences Ramón y Cajal for his research and prestige at an international level.
Even with this successful journey, our Institute has been contacted very rarely by Health care professionals interested in learning more about our treatments. Through the Filum Academy Barcelona^®, our center has given free medical and health care training courses to professionals interested in the Filum Disease and in the accreditation for the application of the protocols of our method.
Unfortunately, some medical professionals, instead of helping patients to have treatment with us or to consult us to receive adequate training about our discoveries and the treatments we offer, prefer to try to discredit our work. But when they observe the excellent results achieved, they begin to examine our operated patients and then say that they can “do the same” when, in reality, they are completely unaware of it. And that puts at risk the results of the treatments and, of course, the health of the patients.
We have already received numerous cases of patients who have had poor results and complications, because of professionals who tried to do what, in reality, they did not know. The problems observed include wrong diagnoses and treatments and also ineffective interventions and/or with serious errors, which worsened the clinical picture of the patients.
The problem is that it becomes more complex to reoperate after erroneous treatments and procedures. In addition, some people may be mistaken and think that these poor results are due to the type of treatment we practice at our Institute. This discredits our method and, what is worse, it prevents patients from obtaining the excellent results that the knowledge of a great discovery, a good diagnosis and a great treatment, could offer them. All this would harm not only an investigation of over forty-five years; but also hundreds of millions of affected people who could benefit from our method.
Of course we know that no patient has the duty to know how to differentiate our treatment from what other doctors say they do. Therefore, we believe that we have the duty to alert you to the possible consequences of a wrong decision.
Before taking a decision, ask yourself:

• Is the neurosurgeon I am talking to a specialist for my condition? How many years has he/she spent studying it?
• Does he/she have many publications that support his/her knowledge and experience about the subject?
• Can he/she explain to me clearly why he/she proposes an surgery using their own arguments and data?
• On how many patients has he/she performed the procedure?
• Does he/she apply the sectioning of the filum terminale in cases of tethered cord syndrome, when it is generally contraindicated?
• Does he/she offer economic advantages to try and persuade me?
• Does he/she say that he/she trained with Dr. Royo when, in fact, ICSEB has already informed me that this is not true?
• And finally: if you believe that it is such a simple treatment, that any neurosurgeon can do it, why do thousands of patients from all over the world consult and come to the ICSEB?

 

Beware of health care professionals who claim to do what they do not know; these false promises can have serious consequences for your health.
INSTITUT CHIARI & SIRINGOMIELIA & ESCOLIOSIS DE BARCELONA

The Institut Chiari & Siringomielia & Escoliosis de Barcelona would like to point out the risks of trusting imprudent health care professionals.

 

There is a multitude of information circulating in the professional domain as well as in communication channels that, if on the one hand it offers different perspectives, on the other, it can complicate understanding and decision making. Medical and health professionals have a responsibility commitment to the sick, to transfer information as clear and exhaustive as possible, to allow them to make the most appropriate decisions about their own health.
The Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB) promotes education and the dissemination of knowledge, being aware that all this affects the patients’ decisions about her/his health and safety. It is on that account that we have prepared this open letter.
We would like to alert about the possible risks of relying on professionals who do not act with due prudence when offering a surgical treatment that they claim is the same as the one practiced by our team. As a matter of fact, they do not have the necessary knowledge nor the experience to achieve our excellent results.
This warning arises due to a misunderstanding about the treatment offered by our Institute. Some people mistakingly believe that the most transcendent aspect of our work is the type of surgical procedure that we perform. However, what is most paramount is to have discovered a new disease, which affects the entire human nervous system: the Filum Disease.
The research carried out by Dr. M. B. Royo-Salvador, ICSEB’s director, has linked together the Arnold-Chiari Syndrome Type I, idiopathic Syringomyelia and Scoliosis and other diseases in a single concept: the Filum Disease. Dr. Royo-Salvador is one of the most prolific authors on these diseases.
The mentioned diseases share the same cause: an abnormal tension of the filum terminale. The Filum Disease affects the spine, the skull and the central nervous system, causing pain throughout the body, changes in sensitivity to temperature and touch, lack of strength in the extremities, fatigue, dizziness, instability, even including alterations of the memory and concentration, and it has a wide range of symptoms and signs. Its consequences can be irreversible.
It is true that the design of an exclusive health method that includes a minimally invasive surgical technique has been a step that saves lives, as it allows us to eliminate the cause of the disease, as well as mortality and morbidity rates of conventional treatments. But it is essential to clarify that this surgical technique is A PART of the health method, which we have developed and that encompasses a series of protocols, which must be respected rigorously.
To offer our treatment correctly, the medical team to apply it needs to know how to correctly diagnose and know what kind of treatment should be applied. Then, it needs to know how to apply it with the best surgical techniques and know how to accompany each case, in a personalized way, for many years.

As you can see the word TO KNOW is repeated in all stages, and that is not a coincidence. To achieve the development of the treatment we offer today, it has been necessary to know, and a great deal! It took more than 40 years of research, which is still ongoing, since our Institute, in addition to seeing patients from more than 75 countries, is the only one in Europe recognized for its research and development of the diseases that we treat, holding the I + D + i accreditation by the Certification Agency in Spanish Innovation (ACIE).
ICSEB has furthermore gained the recognition of innovation by listed in the Spanish Registry of “Innovative SME” of the Ministry of Economy, Industry and Competitiveness; the new “Certification ISO 9001: 2015 (IQNet and AENOR)”, in the activities of research, diagnosis and treatment of the Filum Disease and also in the diagnosis and treatment of neurosurgical diseases.
One of the results of the constant effort to consolidate the protocols and quality standards is the satisfaction rate among operated patients, which is 94.2%, with excellent subjective clinical and surgical results. Likewise, in February 2019, Dr. Miguel B. Royo-Salvador has been distinguished as a member by the Academy of Health Sciences Ramón y Cajal for his research and prestige at an international level.
Even with this successful journey, our Institute has been contacted very rarely by Health care professionals interested in learning more about our treatments. Through the Filum Academy Barcelona^®, our center has given free medical and health care training courses to professionals interested in the Filum Disease and in the accreditation for the application of the protocols of our method.
Unfortunately, some medical professionals, instead of helping patients to have treatment with us or to consult us to receive adequate training about our discoveries and the treatments we offer, prefer to try to discredit our work. But when they observe the excellent results achieved, they begin to examine our operated patients and then say that they can “do the same” when, in reality, they are completely unaware of it. And that puts at risk the results of the treatments and, of course, the health of the patients.
We have already received numerous cases of patients who have had poor results and complications, because of professionals who tried to do what, in reality, they did not know. The problems observed include wrong diagnoses and treatments and also ineffective interventions and/or with serious errors, which worsened the clinical picture of the patients.
The problem is that it becomes more complex to reoperate after erroneous treatments and procedures. In addition, some people may be mistaken and think that these poor results are due to the type of treatment we practice at our Institute. This discredits our method and, what is worse, it prevents patients from obtaining the excellent results that the knowledge of a great discovery, a good diagnosis and a great treatment, could offer them. All this would harm not only an investigation of over forty-five years; but also hundreds of millions of affected people who could benefit from our method.
Of course we know that no patient has the duty to know how to differentiate our treatment from what other doctors say they do. Therefore, we believe that we have the duty to alert you to the possible consequences of a wrong decision.
Before taking a decision, ask yourself:  

• Is the neurosurgeon I am talking to a specialist for my condition? How many years has he/she spent studying it?
• Does he/she have many publications that support his/her knowledge and experience about the subject?
• Can he/she explain to me clearly why he/she proposes an surgery using their own arguments and data?
• On how many patients has he/she performed the procedure?
• Does he/she apply the sectioning of the filum terminale in cases of tethered cord syndrome, when it is generally contraindicated?
• Does he/she offer economic advantages to try and persuade me?
• Does he/she say that he/she trained with Dr. Royo when, in fact, ICSEB has already informed me that this is not true?
• And finally: if you believe that it is such a simple treatment, that any neurosurgeon can do it, why do thousands of patients from all over the world consult and come to the ICSEB?

Beware of health care professionals who claim to do what they do not know; these false promises can have serious consequences for your health..

 INSTITUT CHIARI & SIRINGOMIELIA & ESCOLIOSIS DE BARCELONA

Evelyne and Joël Saint-louis                                                                                                  Irène Saint-Louis 21 rue des Chaponnières                                                                                                      Born 27-03-1996 89100 Gron                                                                                                                          High school student Tel : 09 54 39 09 32                                                                                                              9th of Jan 2014   LRAR A Mrs. Marisol Touraine Health Secretary 14 Avenue Duquesne 75350 Paris 07 SP   Subject: Reimbursement of cross-border treatment – rare diseases – Syringomyelia Madam Minister, Our 17-year-old daughter Irène Saint-Louis, and us, her parents, wish to make you aware about the reimbursement of the treatment of a rare disease, syringomyelia, of which the pathophysiological mechanism seems to be the same as of idiopathic scoliosis. Nearly at the age of 6 Irène was diagnosed with scoliosis and the indication was limited to simple check-ups. Irène is full of life, she practices dance, gymnastics at interregional level, has a good social life and excellent results at school. In 2010, because of back pain in the lower left sub-ribcage region, we did an orthopaedic consultation at the Saint-Joseph hospital where she was diagnosed with syringomyelia. She was referred to the reference centre for syringomyelia at Kremlin Bicêtre. At this time the classic painkillers, which were prescribed, no longer soothed her pain. She regularly took anti-inflammatory and sometimes (rarely) took opioid drugs prescribed by her doctor. The surgeons whom we visited proposed a bi-annual orthopaedic and neurosurgical monitoring (4 visits per year) for all the treatments, and give us a new test report (X-Ray and MRI) every time we visited and it required us to drive regularly to Paris and Irène had to skip the classes, later had to recover them, which caused her even more fatigue. On the other hand, it was difficult not only to obtain and synchronize the medical appointments but also the appointments of scanning services which refused to give us the results in hand on the very same day. In this way, we are forced to carry out multiple journeys to Paris from Gron. Therefore, it was a journey full of obstacle that Irene had to do for the last three years without any results, because apart from the advised bi annual check-ups, the only proposed treatment was taking Paracetamol which showed to be totally ineffective in her case. Indeed, new neurological disorders appeared: urgency to void, misalignment of the tongue and uvula to the right, cutaneous hypoesthesia, certain reflexes were absent, dysphagia for liquids and solids appeared, along with an intensification of smell that could become annoying in the day-today life (hindrance in alimentation); and 2 times she experienced an episode of severe lower limb weakness with a feeling of dizziness. Searching in the Internet, we found information on the work realized decades ago in this field by Dr. Miguel B. Royo Salvador, Neurologist and Neurosurgeon, Director of the Institut Chiari & Siringomielia and Escoliosis Barcelona. Regarding this institute, we had been explained in Paris that the proposed treatment was useless, and that the results, if they had any, were only linked to a placebo effect. Trusting the team which was a reference in France, we continued Irene’s follow-up in the Kremlin Bicêtre for three years and during these years, although her disorders increased, her pains increasingly made her incapable to do things (following difficult courses: she had to attend certain classes remaining standing at the back of the class with teachers who were fortunately affable) no treatment was proposed. That is why we finally decided to take Irene to a consultation in Barcelona, in order to have the opinion of Dr. Royo. She was diagnosed to be suffering from “Cord Traction Syndrome”, with syringomyelia and idiopathic scoliosis and Irene left the appointment happily because finally she found a possible solution for her problems. As she wanted to be operated, we, his parents agreed to her request. The budget for the surgery and stay at hospital with an accompanying person amounted 15,772, 00 euros. We acquired a loan repayable over 9 years. To this we had to add the cost of travel, hotel, restoration, travel etc. Our daughter was operated on 16^th of January 2014. The surgery lasted less than an hour and it left a small scar above the coccyx. In the next few hours after the operation, the uvula and the tongue centred, the reflexes reappeared, sensory disturbances, besides mechanical pain decreased along the spine. Within the past one week, Irene was feeling better. Two consultations are still planned in Barcelona to monitor her state: one within a month, and another within 6 months. We are various families to accompany our relatives to Barcelona, where they are attended successfully by the team of Dr. Royo, while the only treatments proposed in France for this disease are either ineffective or sometimes craniectomy, a heavy and invasive surgery that lasts 2 or 3 hours and with costs (especially long post operative follow-ups), and risks. Considering the above, don’t you think Madam Secretary:  

• It is deeply unfair that people affected by this disease have to bear alone the cost of a treatment, which is till date is the simplest and most effective, that is proposed to them, under the pretext that this treatment is carried out only in Spain, some patients must therefore give it up just because of lack of means?

• It is abnormal that the affected patients, have to demand “a high level of health protection … and” health care … effectiveness ” as explained by Directive 2011/24 / EU of the European Parliament dated 9 March 2011 applicable since October 25, 2013, are deprived of such care susceptible to definitely relieve them from their disease, under the pretext that such care have not been applied in the national territory?

• That from a long time the French health system does not have the means to propose the patients of syringomyelia and other associated pathologies such a simple, effective and comfortable therapeutic method as the one proposed by Dr. Royo in Barcelona. Nothing can justify the denial of the right to be treated elsewhere than in France and similarly the right to full reimbursement of the cost of the processing?

Therefore Madam Minister, we would to ask you persistently to intervene in favour of the affected patients so they can receive the most appropriate care according to their state, being cross-border, and this without any hindrance on the part of health systems and French social security. Taking into account the proven effectiveness of the treatment method developed by Dr. Royo, all the measures taken in this regard would benefit not only the mentioned patients, but also to the French social security. Indeed, once cured, these patients are no longer burden to it. Finally, couldn’t it be contemplated as a European practice, for the benefit of all, a greater cooperation between health systems of different European Countries of the Union? In the hope of a positive response in this regards and thanking deeply beforehand, Please receive my sincere considerations. Evelyne Saint-louis                                           Joël Saint-louis                                         Irène Saint-louis

Rome, 30/03/2014

Dear Dr. Miguel B. Royo Salvador,

I have decided to write this letter in Facebook not only because I consider it just to thank you publicly and express my infinite gratitude and consideration, but also because I hope that my words can help people who are suffering from same genetic, rare and incurable disease as I did.

When I arrived at the Institut Chiari & Siringomielia & Escoliosis de Barcelona 5 years ago, I was a woman with many fears about the bleak future that I had been presented with: on suddenly discovering that since birth I was suffering an inherited, rare and incurable genetic disease associated with two other diseases which over time would probably lead me to total disability with excruciating pain. It was a blow too hard to bear.

I had three options: to retrace my steps and decide to undergo a dangerous skull surgery which I had managed to avoid in the same operating theatre thanks to the honesty of the neurosurgeon who was going to operate me; impotently follow the gradual worsening of the symptoms which had started to affect my life for a long time; believe in the way that you started over 35 years ago and was criticized by most neurosurgeons (I don’t know whether it’s for of lack of knowledge or for other reasons) and put my life in your hand. After talking to patients operated by you, consulting with my loved ones and listening to my mind and my heart, I didn’t have any doubt and arrived to your institute in Barcelona.

Finding the existence of such a great man who is so humble and close, supported by an equally wonderful team of professionals, it was the confirmation of the subsequent fact: that it was the right choice, the only possible choice.

5 years after the surgery of the Filum Terminale, gradually I have recovered many physical abilities that seemed lost permanently. I picked up that picked up the MRI I do every year and as always, I started to read the report with some fear and the science had again enforced your work. The report said, “ Spine: the cervical-thoracic syrinx is clearly reduced both in the highest thickness, formerly it was of 7.4 mm and now is of 4.5 mm, as in the craniocaudal extension, formerly it was extended from C3 to T4 and currently arising in correspondence of the lower limit of C4 and ending in correspondence of the middle third of the T4.”

The one who knows these serious diseases knows perfectly that this is a great result and that I do not exaggerate if I say that you were “my light at the end of the tunnel”.

Therefore, I want to thank you and your team publicly for having gifted me and many other patients, who trusted in you and were delivered a new wonderful opportunity of life in their hands.

With all my love and my infinite gratitude,

Rita Capobianco.

We would like to express its most sincere and heartfelt gratitude to all those, persons and entities, who attended and participated in the VII Meeting “Chiari & Scoliosis & Syringomyelia Foundation” for patients. Bari. Italy. VII Reunión “Chiari & Scoliosis & Syringomyelia Foundation” para pacientes. Bari. Italia. that was held this past 16 February 2013 and particulary to all those persons and entities, private as well as public, who helped and co-operated with the project, the preparation and organisation of this meeting, and contributed to it being a great success and the high degree of dissemination that we have achieved all together.

Thank you very much. Institut Chiari de Barcelona

Please find the response here.

To the Italian Association AI.SAC.SI.SCO, its president Mrs. Cristiana Cattaruzza, the delegate for Sardinia Mrs. Caterina Fozzi, Mr. Gianfranco Sibiriu, to all the oficial entitites and people who have taken part in the organization of this magnificent event, the “Chiari & Scoliosis & Syringomyelia Foundation” for patients in Sardinia.

On behalf of the entire team we would like to thank them for all the support, the warm welcome and reception.

With warmest regards form the entire Institut Chiari & Siringomielia & Scoliosis de Barcelona.

Dr. M. Royo Salvador

Querido amigo te escribo…

Dear friend, I write to you… Dear Dr. Miguel Royo Salvador: I would like to allow myself to call you simply Miguel. I am writing this short letter to you to express my gratitude and recognition, being one of the few lucky people in the world who have been able to meet you. I would like to speak not so much of your genius talent in the field of neuro-craneo-vertebral neurosurgery (it is not necessary, I would not even know how the use the adequate medical terms since I myself work in a completely different area to yours), but of your human gifts and qualities. I was (luckily) able to participate in an event in Trieste organized by the “Associazione Italiana Sindrome Arnold Chiari, Siringomielia, Scoliosi Filum Tomizzati” on Satuday 12/11/11 in the “Circolo Sottufficiali”, because me and my daughter were accompanying my wife, Misses Rita from Rovigo, who you had performed the Sectioning of the Filum Terminale surgery on in May this year. As you will remember, my wife suffers from a severe kind of adult scoliosis, and was suffering, a few years a ago, from a constant strong pain in the right arm and of a serious respiratory insufficiency with a lack of oxygenation of the blood. Now well, dear Miguel, after your surgery, the strong pain in the arm has almost disappeared, whilst the respiratory problem has improved notably, and, after a postoperative with many ups and downs, the values of the oxygenation of the blood (arterial blood gas) have currently returned to almost complete normality. But as I said, in this letter I would like to underline, apart from your huge talent as a global neurologist and neurosurgeon, your human gifts and qualities, those of a normal person within reach of others. After the meal organised at the end of the event, I had said good bye to my friends and acquaintances I headed to the bar of the “Circolo” to have a coffee, when you arrived, and drinking the coffee together, as old friends do, we kept on talking a little about my wife Rita´s case. To a certain question of mine you answered that my wife had also been lucky. Well, dear friend Miguel, you were mistaken: luck is like the faith in God; you have to look for it. We did look for it (through the information organs, the Internet, etc.) and we found you. Thank you, dear friend Miguel. I would like to consider this testimonial as a small tribute to your work and that of your extraordinary medical and collaborators team, and hope that all the Arnold Chiari and Syringomyelia patients that don´t know you yet will read this through the media, and especially those neurosurgeons from the “Civile” hospital in Rovigo that we asked for help before contacting with you, who a priori ruled out that the pain in the arm that my wife Rita was suffering from could have been caused by the Syringomyelia, and those specialist physicians in pneumology and pain management who spoke amazed of a miracle when considering the obtained results. I finish, dear friend Miguel, thanking you once more, you and your team of doctors and collaborators, and I hope that we will have another coffee together in May 2012, when I will accompany my wife to Barcelona, to the Institute for her post-operative control visit one year in. Rovigo 14/11/2011 Gianni Lanzoni

To all the members of the A.M.I.S des M.O.M association:

On behalf of the Institut Chiari & Siringomielia & Scoliosis de Barcelona team, we would like to thank you for the fantastic support, material as well as personal and emotional, for the organization of the 3rd Meeting “Chiari & Scoliosis & Siringomielia Foundation” for patients in Lyon.

We hope that your dedication and altruism for others will be appreciated in the way we do and we would like that your marvelous humanitarian task shall continue with the help of everyone.

All the members of A.M.I.S des M.O.M and its board please receive an affectionate hug from every single one of us who were able to share this great day of science, communication and emotion.

Dr. M. Royo Salvador, Mrs. Mara Espino, Ms. Gioia Luè, Ms. Pei Chen and Ms. Samantha Meir.

To all the members of AI.SAC.SI.SCO:

Dear all, on behalf of the team of the Institut Chiari & Siringomielia & Scoliosis de Barcelona, we would like to thank you for the fantastic support, personal as well as emotional, expressed with your participation in the 3rd Meeting “Chiari & Scoliosis & Siringomielia Foundation” for patients in Lyon.

We hope that your marvelous humanitarian task and our collaboration will continue in the future with the help of everyone and more and more in the interest of the affected.

All the members of AI.SAC.SI.SCO and its board please receive an affectionate hug from every single one of us who were able to share this great day of science, communication and emotion.

Dr. M. Royo Salvador, Mrs. Mara Espino, Ms. Gioia Luè, Ms. Pei Chen and Ms. Samantha Meir.

(We are here reproducing an open letter from Dr. Francesco Crocè, a patient and physician who underwent the Sectioning of the Filum Terminale procedure. You can also see his testimony on this website – section “Testimonials”)

Three years after the surgery of the Sectioning of the Filum Terminale carried out by the Institut Neurologic de Barcelona, directed by Dr. Royo Salvador, and reason for the creation of a foundation, AI.SAC.SI.SCO, which takes care of the “filumtized”, I have the moral obligation to inform all the affiliated, and moreover, all the patients affected by Arnold Chiari I, Syringomyelia and Scoliosis, of the clinical and radiological results of my personal experience as a patient/physician; hoping that this letter will help those who have confusing ideas about his matter.

Three years after the surgery, I can confirm with clinical and radiological certainty that the Sectioning of the Filum Terminale has worked to make disappear symptoms like: left interscapular pain, reduction of force in the upper right extremity, paresthesias in the lower extremities, nystagmus, nocturnal apneas and mental confusion.

The only symptom still present is a pain in my calves. None of the neurosurgeons consulted, including Dr. Royo, have been able to give me an adequate scientific explanation for this.

Regarding the radiological evidence, there has been a relocation of the cerebellar tonsils, the medullary cone and a reduction of the extent of the cervical syringomyelic cavity.

Despite such clinical and radiological evidence, I still encounter skepticism from fellow neurosurgeons, except for a few open minded, and this unfortunately explains the difficulties of the people who call me to ask for clarifications regarding these pathologies.

In fact, I would like to tell all patients that the Sectioning of the Filum Terminale by neurosurgical technique is done exclusively by Dr. Royo in Barcelona, and that in my experience, and not only mine, this procedure is completely free of risks.

I invite you to not trust those who maintain that they do the same surgery.

I also invite you emphatically to not allow that your skull gets opened – it is not useful and in the majority of the cases the pre-existing clinical situation even worsens.

Now then, I wonder, how it is possible to have doubts whether to have ones skull opened (with the implied risks: death, paralysis, etc.) and to have a simple cut at the coccyx level; unfortunately the explanation lies in what I mentioned before, my colleagues are still skeptical also in the view of clinical and radiological evidence and this is unfortunately transmitted to the patients.

Then there is the financial part, which might be the most unpleasant obstacle.

I hope that the creation of this association will be able to help people to solve this problem.

Please excuse me, but I have willingly had to be synthetic and avoided technical/scientific terms so that everyone can understand me.

I HOPE THAT THIS LETTER HELPS ALL THOSE WHO HAVE CONFUSING IDEAS.

I OWED THAT MUCH.

DR. FRANCESCO CROCÈ

---

Associazione Síndrome Arnold Chiari I – Siringomielia – Scoliosi – Filum Tomizzati 

December 22, 2009

Dear Sirs: I am writing to you upon learning about the constitution of the “Associazione Síndrome Arnold Chiari I -Siringomielia – Scoliosi – Filum Tomizzati” (AI.SAC.SI.SCO.) that for its name alone I feel very touched, as it expresses very clearly, emphatically and conclusively, the result of 35 years of my investigation. As a result of which, we now attribute the traction of the filum terminale as the cause of the three diseases; Arnold Chiari I, Syringomyelia and Idiopathic Scoliosis. And also, that the way to eliminate this cause is by the surgical section of the filum terminale, and thanks to the minimally invasive techniques, it can be performed with a minimum risk and almost as ambulatory surgery. I know the people who have constituted the AI.SAC.SI.SCO. Association, and I want to publically acknowledge their benevolence, dedication and altruism; always being at the disposition and in the interest of the other patients. As a person and as a doctor I am very satisfied that a group of my patients have made the firm and clear decision to support and help our Chiari & Scoliosis & Syringomyelia Foundation (CSSf) and with that, many other patients. The AI.SAC.SI.SCO. is the first non-professional health association that supports the work of our team publically, which makes us all feel an emotion and affection that we have not felt until now.

Now, at last, we know that a part of the association represented by the AI.SAC.SI.SCO. is entitled to us and justifies, with its existence and that of our patients, all the effort made until now. For this reason, I convey to them with all my affection, that we will continue investigating and working for them. On my behalf and that of my team, we would like to thank you. Dr. Miguel B. Royo Salvador