Published by ICSEB at 4 September, 2012
Surgery date: April 2012
We are Carmine and Maria Cavallo, Italians from the Brindisi region. We very much want to and also feel that it is our duty to tell our story for those who have discovered that they affected by the Chiari I syndrome.
We are a young couple with two kids, Nunzia of almost five years and Domenico of two years. At the age of three, our beloved Nunzia was suffering from headaches. Our paediatrician assured us that this was due to her growth and that it would disappear over time. But Nunzia’s condition worsened remarkably: intense posterior left sided headache, tiredness, stuttering, loss of balance (she would fall over without noticing), muscle spasms, she wasn’t able to walk, she would get tired after just a few steps. And on top she would faint.
In February of the current year we took Nunzia to the “House for the relief of the Suffering” at the San Giovanni Rotondo hospital, where thanks to a magnetic resonance she was diagnosed with the Chiari I syndrome: compression of the cerebellum and the cerebellar tonsils due to a narrow braincase. They told us that this malformation was war very rare and dangerous, that it could lead to dramatic consequences, up to a cerebral infarction – death.
In Italy, this disease is treated by means of the craniectomy surgery, a very invasive technique, where the bone of the skull is opened and after surgery there is no guarantee for lasting results, but deterioration.
We felt that everything was falling into pieces.
It just couldn’t be true.
We decided to get a second opinion, so we approached a neurologist at the “Gemelli” hospital in Rome.
He too, studying the MRI, confirmed the Chiari I syndrome.
This neurologist seemed very optimistic to us, he was prepared to treat her by means of the craniectomy, but we had to wait for ten days, as soon as he would be back from a conference.
We went back to our village.
Whilst waiting for a call from the “Gemelli” hospital to do the craniectomy procedure, we got to know the sectioning of the filum terminale technique by Dr . Royo Salvador at the Institut Chiari & Siringomielia & Escoliosis di Barcelona over the Internet. We read the stories of those who had been to Barcelona and had had this procedure, and we contacted some of them over the phone. All of them encouraged us to pursue this path, which currently is really the only viable one. We were enthusiastic and full of hope.
We contacted the Institute in Barcelona. The psychologist Gioia Luè was very kind and organised the surgery for us. The only obstacle that we encountered was overcoming the cost for the surgical treatment.
We didn’t have the required sum available at that moment, so parishes, neighbours, acquaintances and shopkeepers helped us. Everybody helped us.
We collected the necessary funds for the surgery, the trip and the stay. On the past 12th of April Nunzia successfully underwent the sectioning of the filum terminale surgery; and already a few hours after surgery her reactions to the reflex stimulations improved, and afterwards she no did not faint again nor have strong headaches. On 29th of May we went back to Barcelona for a control visit. Dr. Royo Salvador confirms that the Arnold Chiari I syndrome has been blocked and there is and manifest recovery of the coordination in her movements. We also observed that she does no longer stutter and that she is keen to play a lot, just like all children her age.
We want o express our deep gratitude to Dr. Royo Salvador for his humanity and kindness. Thanks to all those who encouraged to pursue this path and to those who gave us their support in collecting the financial aid. The regional social services to not pay for the surgery and to not offer any aid.
We would like to tell those who read this letter to never give u hope, because as an old proverb of ours says: God favours the happy man!
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