Rosalia Mocciaro. Arnold Chiari I Syndrome, Cervical Syringomyelia and Idiopathic Scoliosis

Published by ICSEB at 31 August, 2008

Date of intervention: January 2008

My name is Rosalia Mocciaro, I´m a 59 year old woman, born in Sicilia and a resident of Palermo. I´m a graduate of biology and my profession is teaching. Until the age of 55, I didn´t know that I was suffering from a rare disease called Arnold Chiari Syndromeand Siringomelia.

My total ignorance was due to various reasons: in the first place, the fact that the technology of that time did not permit an in-depth investigation, like the techniques developed today, to the point of now being common medical methods. In spite of this, in the following years (in the 90´s), it´s true that the Sicilian specialists, analysts and neurosurgeons that I was consulting in the step by step, slow, unrelenting advance of my disease, were completely insufficient and professionally incompetent.
It´s the moment to remember that disorders like scoliosis, loss of strength in the extremities and the various pains in the head and neck that I started suffering, more precisely in my years of maturity, were interpreted (irresponsibly, superficially and lightly) as “school” scoliosis or sinusitis and never, I say never, did any of the specialists that I consulted advise me or prescribe me to do a resonance as the correct diagnostic procedure.

This confirms that in Italy, and I dare say also in the rest of Italy, the doctors do not begin with a correct diagnostic procedure, that is to say facing the problem backwards, starting with the eventuality of eliminating something serious with the proper tests and consider the possibilities of obvious and banal disorders. In fact, such a procedure would have permitted me to know in advance, way in advance, the right and correct analysis of my disease; with all the natural consequences of an opportune intervention, and not an intervention that instead- for all that was mentioned before- was inadequate and which I had to suffer with more years, a risky, delicate and invasive operation that led me to long, suffering post-operative results after my first and unfortunate only intervention of cervical decompression.

All this said, here I´m going to describe – for more clarity – the chronological story of my disease from the moment of its appearance.

At approximately the age of 20, I remember always having a pain in the thigh and right leg with diminished sensitivity to heat on the whole right side, with burn problems when I was near a source of heat. I always investigated but none of the doctors knew how to give me adequate answers. Afterwards, throughout the years I noticed a diminishment of strength in the left leg and arm, with decrease of movement and constant increase of the scoliosis, forming a severe kyphosis and pains that kept getting worse. I had continuous x-rays, always accompanied with an infinite series of medical tests, so many that I can clearly say that I have spent a fortune; the answer they gave me was always the same: ” Madame, you have a scoliosis that you should have taken care of when you were young”. Because of this mistaken, superficial and unprofessional diagnosis, for years I underwent inappropriate physical therapy that in the area of Palermo is usually very unprofessional, not only totally inadequate. Besides, during my life I always had problems suffering from the cold, this induced me to hate the winter, while the best season (that gave me a relaxing respite) was always the summer, dispelling my debilitating disorders. Through the years I noticed how some of the problems got worse: for example walking became more insecure and difficult, constantly losing my balance and falling. In fact it´s not by chance that I suffered more broken bones in the last years.

I stumbled precisely with the left foot because of the decrease of strength in the left leg, until when I was 48 (after a strong flu), I started to suffer horrible pains in the neck and nape of the neck irradiating to the whole head; analgesics were not enough, the medical consultations diagnosed, with pedantic insistence, a sinusitis and cephalic muscular tension. I continued with these pains that were diagnosed as arthritis until 2003, until one day I decided, with the advice of an unknown but honest therapist, and of my own will, to have a cervical and dorsal MRI.

The result of this examination was that I had a rare disease, precisely Arnold Chiari associated with Siringomelia cervical from C1 to C7.

I didn´t know what to do because I didn´t know what this was, then I took my MRI to a neurologist in Palermo who didn´t know how to behave with me, but with an attitude of “psychological terrorism”, He then informed me that I should have gone immediately to a neurosurgeon as my situation was very dangerous.

That´s when I had other medical consultations, until a notable neurologist from Palermo convinced me to see a neurosurgeon from a well known and equipped scientific center of our beloved Peninsula Italica (the Instituto C. Besta de Milan for clearing everything up for us). They told me about Professor Broggi (as a major authority in this field). In September 2004 I went to Milan to consult with this professor; who with a trite, cold, arrogant and pretentious attitude typical of the “influential members” sadly famous in Italy, insinuated that my situation was very severe, and then advised me to have decompression surgery, explaining that this intervention would resolve the problem and that with time it would permit me to have a better quality of life (his words).

The 3rd of November 2004 I underwent this surgery in the Scientific Institute of recovery and cure (sniff, sniff!) C. Besta de Milan. The operation caused me a long, suffering and painful postoperative period that lasted six months.

Amongst all the problems, there still remained the problem of walking and added to that, constantly unstable walking, pain in the back of the neck, intensifying in the neck and becoming more evident; adding to that, a terrible dysphasia of liquids. In fact, since the decompression, I was never well. After the operation, I wisely had a resonance done every year and after three years the situation did not improve at all, on the contrary, the siringomelia of C6-C7 spread after the operation. Very worried, I searched for news on the Internet about this rare and complex disease, and discovered that in Spain, more specifically in Barcelona, is Dr. Royo, a prestigious neurosurgeon who performs the section of the Phylum terminale and that this intervention (according to Dr. Royo´s theory) blocks the disease. Confident and enthusiastic, I discovered that together with this Doctor´s name was an efficient medical center, the Corachan Clinic, which is a prestigious, well-known clinic for many Italians, affected with this rare disease. I also learned about the Torino Association which is contacted by many unfortunate people with Arnold Chiari I disease and there are many written and oral testimonies about this miraculous practice. I went ahead and started to make intense and useful contacts with Italian patients in different parts of our loved peninsula who were operated on in Spain, obtaining enthusiastic testimonials not only of certain improvements but at times, complete and almost immediate cures. Obviously, that pushed me forward with strength and great enthusiasm down this path.
In November of 2007 I got in contact with the Neurological Institute and had a consultation on the 28th of November 2007. There, Dr. Royo advised me to have this intervention as it was indicated and adequate in my situation. He commented that the decompression procedure was quite obsolete besides being invasive and very dangerous. This news was confirmed to me by more testimonials and neither can you underestimate the mortality rate (as some patients don´t come out alive and many have their quality of life worsen).

I took care of the dossier to obtain the refund of the costs from the Region of Sicily, but I won´t get involved in the complicated Italian bureaucracy.

The cost of the intervention was 12.560Euros and I (like many other patients) did not have this amount. But with determination and will power I decided to go ahead with the surgery. With the passionate help of my closest relatives, I managed to raise the necessary money. I discovered that to get a refund I needed a certification from a neurosurgeon from a public hospital in Palermo, but after consulting three neurosurgeons, I got a negative response from all of them, with the same reason: Dr. Royo´s technique was not yet recognized in Italy, so the certificate to obtain the authorization from the “Ispettorato Della sanita de Palermo” could not be stipulated. It comes to my mind that many rich citizens have surgery abroad and that knowing the right people and having “connections”, they often obtain substantial help from the wide network of organizations and entities and from charitable foundations in our country. More decided and realistic, I imagine, I followed the trail of that famous (super-famous boss of the mafia) who some years ago, through the local social security, !!!! obtained the authorization and financial help for a banal prostrate operation in a prestigious French clinic!!!!
Despite the negative response from the neurosurgeons of Palermo (from whom I was able to confirm the total ignorance on the subject and besides a hostile and cooperative attitude of silence and sealed agreement of self-protection) I went to Barcelona, because this technique adopted by Dr. Royo, in Europe is only practiced there; with the exception of the United States (where the Professor Bolognese operates in the Chiari Institute of New York). I have to say that during the time that I was looking for the authorization for the operation, many times solicited, insistent and erroneously the neurosurgeons of Palermo informed me that this operation was also done in Italy.

This news is totally false (except two shy attempts by anonymous Italian neurosurgeons in anonymous hospitals), probably not capable of guaranteeing the great experience accumulated by Dr. Royo in the thirty years of his study and career in this field.

Very aware that I had to put my life in the hands of a courageous personality, and in contrast to the other intervention in Besta for the extreme danger of the decompression, the 31st of January 2008 I was operated on, with very positive post-operative results. For the moment, obviously some ups and downs, but on the whole, normal. Obviously, I´m hoping to notice considerable improvements with this intervention, and at least I am confident, while waiting for verification, that the disease has been blocked (with another control resonance).

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