Geri Giorgi. Neuro-Cranio-Vertebral Syndrome. Filum Disease. Cerebellar Tonsil Descent (Arnold-Chiari I Syndrome).

Published by ICSEB at 10 January, 2025

Surgery date: 8/4/2021
Date of patient testimonial: 19/11/2024

We are Maddalena Gana and Giordano Giorgi, and our son was operated at the Institut Chiari de in Barcelona when he was 6 years old. They performed the filum section because he was diagnosed with Arnold-Chiari I. The symptoms our son had, which appeared after a neck injury and some of which he had even before, have completely resolved over these three years.
In Italy, at first, the specialists did not recognise the cranial and limb neuralgias and the burning sensation at the base of his neck as important symptoms. After an MRI, they finally connected them to this diagnosis.

They then referred us to a neurosurgeon at one of the major hospitals in Rome, who suggested a craniectomy and internal debridement of the neck to create more space and address the compression symptoms. We rejected that option because it was too invasive and risky for our son.

We found out about the Institut Chiari de Barcelona online, thanks to a rehabilitation specialist who had heard of it, and with the approval and support of our son’s paediatrician who had been following him for years, we decided to contact the Institute. We sent over all the medical documents and arranged the trip for the surgery.

With the paediatrician’s help, we managed to get a large part of the surgery cost reimbursed by our healthcare system, since this type of surgery isn’t done in Italy, and it was crucial for our son’s treatment.

Right after the surgery in Barcelona, some symptoms improved right away: he gained strength in his limbs, and the neuralgias in his limbs and nausea disappeared.
Six months after the surgery, after catching Covid in 2022, he had a relapse with joint and muscle pain, which could have been typical “Long Covid” symptoms, but they were also connected to the Chiari malformation.

These symptoms gradually resolved over the next six months. Since then, the remaining symptoms, like the neuralgic burning sensation at the base of his neck and behind his eyes, have disappeared.

Three years after the surgery, his follow-up MRI shows an ascent of the cerebellum. It is still slightly ectopic, but much reduced, and the cervical and lumbar curvatures are improving, recovering their natural lordosis.

We are so grateful to the Institute Chiari de Barcelona for their incredible research to improve the lives of so many people with these conditions. The whole team throughout the entire process from the surgery and post-op to the follow-ups in the years after has treated us wonderfully.

Email: [email protected]