Valente Family

Published by ICSEB at 2 June, 2012

Giulio Valente. Cord Traction Syndrome. Descent of the cerebellar tonsils.

Hello, my name is Giulio Valente, I’m 25 years old and in February 2012 Dr. Royo performed surgery on me in Barcelona because of Arnold Chiari I.

I only found out in November 2011 that I had Chiari, because I did a check up MRI due to kinship with patients of this syndrome. Yes, kinship.

My mother had surgery because of Arnold Chiari I in April 2011, so at that point all of us three children took a check up MRI, and it turned out that all three of us were affected by this “rare” syndrome, and so all three of us had the sectioning of the filum terminale surgery.

Rare with quotation marks, because I know a lot of people who could have this disease, not to speak of all the people who do know that they have it and have undergone a procedure by means of any of the different techniques that the international surgical menu has to offer; it seems that sometimes it is convenient to pretend that is a rare disease, or moreover, it is convenient for those who govern us to say that it is something rare.

But now to my story. Since I was eight years old, I had always more or less intense discomforts, related to a too quick development and pretty excessive growth, that came along with several problems chasing each other between internal and external organs:  connected with the blood circulation in the limbs, proteinuria in the urine, connected with the kidneys being easily fatigued. Amongst the variety of symptoms that I had always suffered from, there was one that was hard to explain for the doctors I approached, sometimes it would happen that I would get such a headache that it would drive me crazy, it would last for many minutes and would affect not only the head, but also neck, jaw, teeth and eyes. Due to these pains I had once even been advised to go and see a neuropsychiatrist, but I never went, also because often those headaches would disappear with a little paracetamol or by themselves, and I did not believe that a psychiatrist could do any better.

Around the age of 16 everything seemed to be under control, but it was at the age of 19 that a new disorder appeared, this time bowl related, I lost 15 kilos of weight in less than two weeks, I wasn’t able to eat anything, because I would throw up, that time also the doctors studies me for a few months, with tests of all sorts, but nothing, and within some months it all disappeared by itself and I didn’t have another problem until I was 22 years old.

I was working as a night porter at a hotel and one, whilst I was typing on the computer, I had an intense sensation of heat in the right arm, I felt that it was swollen and couldn’t move it, it all passed in a few minutes. This disturbance started to show almost every night, but this time, given the history, I decided to not approach any doctor, and as a matter of fact a few months passed and the disorder appeared less every time until it disappeared completely, and with disappeared the headache, that had been accompanying it.

In August 2010 I had a motocross accident, I fractured a thoracic vertebra, I kept normal convalescence, a total of four months between hospital, wheelchair and corset, and then I went back to work.

Already during recovery I experienced vertigos that lasted few seconds and that would leave me confused for some minutes, but, when I went back to my normal rhythm of daily life, the vertigos started to become more intense, up to the point of losing my balance and having to lean on something or someone. I then started to feel intense fatigue in the extremities, in the evening I’d get up fatigued from the chair to go to bed, I started to have memory alterations, it was hard to remember what I had said just before, I started to have problems in the intimate sphere, I feared for the truth about my health, because at 24 years old it was is if I was 80, and instead of being a sporty and active person I started to be lazy, an idler and dodger.

At the same time, my mother, who was suffering from many physical alterations, had done a magnetic resonance and it turned out that she had Arnold Chiari I, with a descent of the cerebellar tonsils of almost one centimeter. A few days after the diagnosis she was so lucky as to meet a girl, affected by the same disease, had undergone a specialist procedure in Barcelona, with Dr. Royo, who used a minimally invasive technique that allowed positive perspectives for the future, the only difficulty being the costs that would have to be met, a big obstacle for us.

That was the beginning of thorough and frequent search on the Internet, I started to get to know the disease, to understand the symptoms, I ‘d often recognize myself in the descriptions, I found out that in Italy the ACI was treated by means of a craniectomy surgery, a very invasive technique involving the brain; I was constantly reading stories of people who had undergone the craniectomy procedure and who after the surgery were in the same situation as before, if not worse, and who saw themselves forced to take ludicrous amounts of medications. I studied the craniectomy technique and compared it with  Dr. Royo’s sectioning of the filum terminale surgery in Barcelona, I read the testimonials of those who had been operated with this technique.

My mother was in very bad shape, and my symptoms went on into the background; we started to search for a solution to make it possible for her to go to Barcelona, we asked for help and we very happy to encounter a response of solidarity that allowed my mother to undergo surgery with Dr. Royo and to experience excellent improvements in few weeks.

Dr. Royo explained that we were dealing with a congenital disease, and, hearing about my problems he advised me to do an MRI, and to also get them done out of principle for my two sisters. They both had the tests done and the result was of ACI and syringomyelia with my little sister and of ACI with the older one. These results scared me and kept on putting of my MRI.

My problems, as opposed to in the past, increased in frequency and intensity this time, taking me to a point were I could no move my legs or get up in the mornings, and so I decided in November 2011 to get the MRI. The result was a descent of the cerebellar tonsils of 3mm (according to Italian law, ACI is diagnosed starting at 4mm), and so my fears were confirmed, I found out that it had been the rupture of the vertebra one year ago that had speeded up the degeneration of the pathology.

I underwent the sectioning of the filum terminale surgery at the end of February 2012, four hours afterwards I was back on my feet and walking without problems, in the first check up, six hours after surgery, I was already showing improvements. Now, six months after, the vertigos have disappeared almost completely, I don’t have that feeling of fatigue in the limbs as before, two weeks after surgery I went back to riding my motorbike, my great passion, and I got my life back.

I want to thank Dr. Royo, who gives of a sense of tranquility even just by shaking your hand; many thanks to the team surrounding him and surrounding us patients, a family that makes feel taken care of, calm, they are people that will always give you an answer, advise, and, why not, also support in facing the obstacles of this disease.

I also want to thank everybody from the AI.SAC.SI.SCO association, with whom we have built a network of mutual help and above all things sharing the experience with facing this disease, that turns out to be particularly difficult to understand, accept and explain to others.