Letter from Rita Capobianco

Published by ICSEB at 8 April, 2014

Rome, 30/03/2014

Dear Dr. Miguel B. Royo Salvador,

I have decided to write this letter in Facebook not only because I consider it just to thank you publicly and express my infinite gratitude and consideration, but also because I hope that my words can help people who are suffering from same genetic, rare and incurable disease as I did.

When I arrived at the Institut Chiari & Siringomielia & Escoliosis de Barcelona 5 years ago, I was a woman with many fears about the bleak future that I had been presented with: on suddenly discovering that since birth I was suffering an inherited, rare and incurable genetic disease associated with two other diseases which over time would probably lead me to total disability with excruciating pain. It was a blow too hard to bear.

I had three options: to retrace my steps and decide to undergo a dangerous skull surgery which I had managed to avoid in the same operating theatre thanks to the honesty of the neurosurgeon who was going to operate me; impotently follow the gradual worsening of the symptoms which had started to affect my life for a long time; believe in the way that you started over 35 years ago and was criticized by most neurosurgeons (I don’t know whether it’s for of lack of knowledge or for other reasons) and put my life in your hand. After talking to patients operated by you, consulting with my loved ones and listening to my mind and my heart, I didn’t have any doubt and arrived to your institute in Barcelona.

Finding the existence of such a great man who is so humble and close, supported by an equally wonderful team of professionals, it was the confirmation of the subsequent fact: that it was the right choice, the only possible choice.

5 years after the surgery of the Filum Terminale, gradually I have recovered many physical abilities that seemed lost permanently. I picked up that picked up the MRI I do every year and as always, I started to read the report with some fear and the science had again enforced your work. The report said, “ Spine: the cervical-thoracic syrinx is clearly reduced both in the highest thickness, formerly it was of 7.4 mm and now is of 4.5 mm, as in the craniocaudal extension, formerly it was extended from C3 to T4 and currently arising in correspondence of the lower limit of C4 and ending in correspondence of the middle third of the T4.”

The one who knows these serious diseases knows perfectly that this is a great result and that I do not exaggerate if I say that you were “my light at the end of the tunnel”.

Therefore, I want to thank you and your team publicly for having gifted me and many other patients, who trusted in you and were delivered a new wonderful opportunity of life in their hands.

With all my love and my infinite gratitude,

Rita Capobianco.