An open letter to Arnold-Chiari I, idiopathic Syringomyelia and Scoliosis patients, and those affected by other associated conditions.

Published by at 13 May, 2019


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



Contact us

icseb-chiari-syringomyelia-scoliosis

Our English Department is at your disposal to help you with your enquiries.

All consultations received through this form or through the different email addresses of the 'Institut Chiari & Siringomielia & Escoliosis de Barcelona' are derived to the medical team to be studied and are supervised by Dr. Miguel B. Royo Salvador.

Opening hours

Monday to Thursday: 9-18h (UTC +1)

Friday: 9-15h (UTC +1)

Saturday and Sunday closed

[email protected]

Care 24 hours

in the form of our website

+34 932 066 406

+34 932 800 836

+34 902 350 320

Legal advice

Legal regulations

Legal notice

Address

Pº Manuel Girona, nº 32

Barcelona, España, CP 08034