Marisa Toscano. Medullar traction syndrome with CHIARI I, Idiopathic Scoliosis, Discopathy in C5-C6, D8-D9 and Protrusion in L4-L5 and L5-S1

Published by ICSEB at 21 March, 2025

Update from Marisa Toscano:

Postoperative check-up 16 years after the application of the Film System®

Surgery date: June 2009

On 3^rd of February 2025, 16 years after the Filum System^® intervention, I returned to Barcelona for a health check-up (the last one was five years ago).Accompanied by Dr. Royo, I had the pleasure of visiting the new headquarters of the Institut, a centre of excellence for scientific research, equipped with cutting-edge tools, and up-to-date with the digital transformation era.

I was welcomed with the enthusiasm of those who have shared the same interests and values over many years, obviously with the necessary differences. Dr. Royo, for having implemented and perfected, together with his team, a minimally invasive procedure for disorders related to our diseases, and for conducting research, teaching, and social assistance with respect for human, ethical, and scientific values, the Foundation; and I, much more humbly, for the volunteer work I did trying to help several patients with the same condition find meaning in our existence, aware that your life has an end until you manage to give value to the life of others.

So today, at 73 years old, I must say that after the intervention, I am ageing in good health; years ago, in fact, I was able to face it, also rejecting the advice of many doctors who gave me diagnoses that all converged on the same classification: degenerative disorders or, worse, depression.

Sure that my mental faculties were not deteriorating, I also refused to take the psychotropic drugs that were regularly prescribed to me.After the discovery of the disease, which took place in 2006, when a perceptive orthopaedist advised me to undergo an MRI, I felt the need to consult a neurosurgeon, who recommended an occipital craniectomy; worried, I wanted to consult another, and then another one, travelling all over Italy, but the diagnosis didn’t change, nor the solution they offered me.

Convinced that they would not open my skull, thanks to the Internet, which allowed me to learn about the Institut Chiari, I overcame the disease with the least damage to my body and, after shedding all my tears, after truly hitting rock bottom, after feeling first-hand what loneliness was, after losing so much, especially an important part of my life, because even my memory had almost fallen asleep; in Barcelona, I found physical and spiritual well-being.

Two years ago, I stepped down from the presidency of Aisacsisco, Associazione Internazionale Sindrome Arnold Chiari, Siringomielia e Scoliosi, which I had the honour of leading for many years, to make space for younger individuals and dedicate myself to my passion, writing. This way, I was able to publish my second book, this one, entirely dedicated to poetry.

You know, when you have health, age has no date; I felt old when I could be considered young chronologically, and I stopped feeling the weight of my years when I was already 58, after the Filum System^® surgery; an excellent solution to my previous health problems.

Thank you, Dr. Royo.

Mistretta, 19^th of February 2025

Marisa Toscano
E-mail: [email protected]

Video testimony from 2015:
Testimony from 2009
Date of intervention: June 2009

I waited for many years to find out to what corresponded my symptoms that sometimes seemed to be a mixture of causes and different pathologies, more frequent each time. I am not be able to count how many doctors I had to go through before getting to a true diagnosis, how many times I have been ignored because no one listened to my problems with real interest; all the doctors attributed my discomfort to neuron-vegetative disorders: “you see you don´t have anything? You have to be strong and try to overcome these disorders with willingness, which do not have anything organic.” I felt like I was unbalanced, that I could not control my emotions and was always in search of doctors and expensive treatments around the peninsula, which often gave to worry about and disturbed family members. Fortunately my husband and mother had enough patience; on the contrary, they always supported me.

When my neck problems worsened due to a traumatism from a light car collision, I was asked to have an MRI done and at last I was diagnosed with Chiari I. This is how we understood where all those problems were coming from all along the course of my life.

A new journey began from one doctor to another; I visited a neurologist in my county who told me my problems were more due to a carpal tunnel in my right hand than the Chiari; the second doctor I visited in Florence in his private consult in Rome was too sure of his authority and did not even want to examine me physically to affirm my conditions, he looked at my MRI and told me textually: “Lady, you have a Chiari. When you won´t be able to stand up anymore and will have to stay in bed, come and see me and I will operate on you.”

He then gave me back my MRI and made me sit down where the secretary was. I was worried. I then, went to see a third neurosurgeon and did some more kilometers and ended up in Milan in a important neurology center, when at that moment, I had already started to look on the Internet to learn about this pathology and I knew that in Spain, Barcelona they were practicing a minimally invasive surgery, being able to block the progress of it.

In Milan, where they attended me with a lot of humanity, after a very precise medical visit, the doctor told me there was a Chiari, but that it was too early to operate on, ¿was I to wait?; when I asked him if he knew Dr. Royo, who operated with a minimally invasive technique using the section of the filum terminale, he told me yes, that he knew him but did not recommend me to go and visit him because he used his profession to only enrich himself. ¡That day I saw my only hope disappear!

On my way back home, to Mistretta, a small but beautiful city in Sicilia, I went to see my general practitioner and relieved myself by letting out all my desperation, because not a single doctor was able to release me or at least relieve my pain, which got to the point of being forming part of my life condition, turbulent and oppressive. I begged him to give me his professional opinion about Dr. Royo´s intervention, but obviously he wasn´t very convinced about it, because he advised me to send an MRI to his colleague from his University, who was important in the neurological field in the United States, but another deception was waiting for me.

His answer in fact was: ” I am not really informed about the technique of the section of the filum terminale”… ¡Obviously, the CHARI was unknown for him!

At this point I wasn´t going anywhere positive and my family was starting to be doubtful. I was already feeling a lot worse, I visualized my future and saw little probability of being able to live a normal life. To find a solution for my illness, I had no other choice than to look for answers, which I did not obtain from the webpage and Internet was my last chance.

I found a forum where a lot of people were affected with the same pathology I had and were operated on by Dr. Royo. One of them was Rosalia who lived in Sicilia, I got in contact with her and she introduced me to others. Everybody gave me optimal information about the professional seriousness, the doctor and his team´s moral qualities and above all the surgery achievements.

My hope of getting back my courage and finding sense to my existence came back. Now, I only had to convince my family that this was the right decision.

My husband and I began a new adventure, my mind was clear and I was sure of the success of the surgery.
Today, three months after the operation, I can say that there is nothing in the world that is more satisfying than getting back a normal life, which guarantees a wellbeing and liberty.

At this point I want appeal against our experts in medicine: “Learn Dr. Royo´s technique. Do not let more useless years go by in believing and making believe that only the Decompression is the solution to this pathology. It is not true! Using this technique, they will demonstrate that they care for people and respect their dignity. Do not persist with the error, at least notice what happens, break the communication barrier, it could be the first step to act in a little invasive way towards the cure of this rare pathology”.

¡Dear Italian colleagues suffering Chiari, lets fight for our rights to achieve justice!

Actually, in Italy, because of the confusion between state and regional competitions, each region has its own politic in medical prices and refunding and this makes it a disadvantage or fortune for someone to be born in one or the other. Depending on the case, provoking then between patients from a same nation; an incomprehensible, unacceptable discrimination and an unequal deal.

You can contact me whenever you wish.

Marisa Toscano
Address: Via Media n. 2 98073 Mistretta (ME)
Phone: (+39) 0921-381091
Mobile: 3207073770
E-mail:[email protected]