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Three little siblings. Neuro-Cranio-Vertebral Syndrome, Filum Disease and Arnold Chiari Syndrome type I

Published by at 22 September, 2017

Dates of the 3 surgeries: 2014 and 2016

Hello everyone!

We are the parents of three wonderful children who unfortunately were born with Arnold Chiari I malformation. We did not imagine that this disease could even exist. It all started  in the first years of our oldest daughter’s life. She had cyclic vomiting and then, as she was growing up, she started with headaches, intolerance to music, light, etc. We travelled all around Italy to understand what condition she had. Our penultimate medical visit was at the Hospital Bambin Gesù in Rome where our daughter was visited by the chief of neurology, who diagnosed a simple headache, without considering it necessary to carry out any further tests. When we told him that our daughter had various problems such  as leg fatigue, dizziness, headaches, etc, the neurologist again told us that it was a simple headache.

As we were not satisfied with his conclusion, we went to the Umberto I Hospital in Rome where they conscientiously indicated that we should do an MRI. The radiology technician at the Hospital gave us the wrong diagnosis of Chiari II Syndrome. Since then, our ordeal began.

We desperately searched on the Internet, we contacted all the most recognized hospitals in Italy and America. In the end, we contacted the Institut Chiari in Barcelona (Spain) where they immediately understood that our daughter’s condition was Chiari I. We began to gather information, to call the people who had undergone surgery there with great results and we decided to trust them and have our daughter operated there.

From that day on, our daughter’s life changed. One month after the surgery, when we returned to Barcelona for the check-up, she was able to walk 10km through the city while before surgery she could not even walk more than 100 meters. She could listen to music calmly in the car, something that before was impossible due to the headaches it caused her.

With the experience of our first daughter, we noticed similar symptoms in the other two children. So we also took them to Barcelona to undergo surgery with excellent results.

We want to express our heartfelt thanks to Prof. Royo, Dr. Fiallos, Elena Vitturi, Gioia Lué and the entire ICSEB’s team. You have given us a new hope for life, for us and for our children who are finally well.

Fabio: +39.335.6043769

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