Published by ICSEB at 5 March, 2013
Date of surgery: July 2011
My name is Paolo Buscemi, I am 27 years old and I’m Sicilian. I am writing to tell my story about how I discovered my disease and Dr. Royo’s surgery. It all started in 2011. I started feeling strange sensations towards January: stiff hands, loss of strength and grip (often things would slip out of my hands), neck ache, pain in the arms, deglutition alterations, problems when urinating. Following the neurologist’s advise, I had a MRI scan, through which I was diagnosed with a wide syringomyelia cavity, from C2 to C5. My neurologist immediately recommended a specialist from Milan. I went for an appointment with him, where he explained in general terms what syringomyelia is. After seeing the MRI report he told me that they were going to have to operate, that there were two kinds of surgery, and not only was it going to be the more complicated one in my case, but he also was not able to say anything certain about the outcome. Additionally, this surgery was going to last 12 hours and he was telling me about a “plasty” that would have to be inserted…I left there completely broken. My mother and my sister were with me that day; after me, a lady who had undergone surgery with this doctor went in for a post-operative check up. We waited outside until the lady came out, as my mother had suggested, asking her for information. When she came out, we asked her how she was and what experience she had had. She was very forthcoming in answering our questions and she told us that they had operated on her with a procedure that lasted 12 hours, that she had recovered gradually (she still wasn’t speaking fluently) and that she had heard that there was a specialised centre for syringomyelia in Barcelona, in Spain. I arrived tired back at home, in low spirits and confused, and I laid down bed to try to relax a little. My sister, who had heard the conversation, started searching the Web and found the centre that the lady had talked about. It was the Institut Chiari de Barcelona. She started reading the website attentively, trying to collect as much information as possible about the disease as well as the types of surgery. When she read that Dr. Royo, the director of the Institute, performed the sectioning of the filum terminale for cases of idiopathic syringomyelia, and that the surgery lasted just half an hour, and it seemed that it was not invasive at all without inserting any “plasties” or anything similar into the body, she cheered up again, and us with her. We read the testimonials of those affected by this rare and degenerative disease, and of those who had put their trust in the Institut Chiari to solve their problem like me. All the testimonials were positive, they talked about surgeries with positive outcomes, about people who on the other hand unfortunately had arrived there after a course of years of duration due to the ignorance that exists in Italy regarding this pathology. I spoke to my neurologist about the discovery of the Chiari centre. At the beginning he was a little suspicious, he wanted to see the website and finally he came round to thinking that everything was normal. I tried to find out whether in Italy they were able to perform the same procedure as Dr. Royo. There were many doctors that pretended to be his pupils. Nothing was true…it was all lies! At the end we decided to book an appointment at the Institut Chiari. Gioia Luè, the contact person for Italy, replied and gave us an appointment for the 11th of July 2011. I went with my mother and sister. Dr. Royo, after examining me and studying the documentation that I had brought along, detected: Cord Traction Syndrome, idiopathic Syringomyelia from C2 to C5 and mild dorsal scoliosis. We immediately took comfort in this; dealing with idiopathic Syringomyelia meant that I could have the surgery. I had all the pre-operative exams on the same day at the CIMA clinic, and they performed surgery the next morning at eight o’clock. After a month I came back to Spain again for the first post-operative check up and there were more improvements. My spinal cord was free for the first time! Today, two years after surgery, I am very well. I hope that my testimonial can help to light up the hope of people lost in the darkness who do not know which path to take…I would like to thank everybody, especially Gioia, who gave me psychological support and calmed me down, and Dr. Royo, a great man, who has stopped the course of my illness, and in my case I can also confirm that the symptoms have disappeared. What impressed me most about him is his great humanity, his achievement to remain humble despite his extraordinary magnitude. I am at your disposal for any information. This is my number:
0039 (0)925 951719
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