Manon Diaz. Neuro-Cranio-Vertebral Syndrome, Filum Disease. Idiopathic scoliosis. Impaction of the Cerebellar Tonsils.

Published by ICSEB at 9 March, 2024

Surgery date: 27/10/2022.
Recording date: 26/10/2023.

My name is Manon, I am 32 years old, and I started experiencing health issues due to scoliosis in my adolescence, at the age of 13. I have undergone various treatments, including surgery. Three years ago, I started noticing a deterioration in my health: neck pain, ‘affected’ discs, arthritis, and neurological problems began to emerge. I had symptoms that had no explanation, such as a burning sensation in my arms and legs, tingling, significant physical and mental fatigue, brain fog, concentration issues, and weakness in my arms and legs.

Despite numerous tests and numerous appointments with doctors in France, I did not receive explanations or solutions. After extensive research, I reached the Chiari Institute in Barcelona, where they were able to provide a diagnosis of Filum Disease. All my symptoms were connected to my tense filum terminale, causing these neuro-cranio-vertebral symptoms. I underwent surgery to section the filum terminale. Everything went very well, and I was well-supported at the Institute. The medical staff was very reassuring, providing me with many explanations about my illness, tests, and symptoms. Everyone was attentive

Today marks a year since my surgery. I feel significantly better. It’s difficult to explain, but my body feels lighter —especially in my shoulders and neck. Previously, I slept poorly due to these pains, especially in the cervical and cranial areas. However, I now experience a more restful sleep and a considerable improvement in mental capacity. The brain fog is much milder today; it comes back occasionally but is not permanent as before. I feel more capable of moving, doing things, and physically fitter.

The first thing I truly felt was that I lifted a heavy burden: less fatigue, much more energy and capability. Also, having a diagnosis for my illness has helped me morally and psychologically. I now know that the filum has been cut, and I won’t experience the progressive worsening that I anticipated before. I have much more confidence in the future and in my abilities and improvements.

It saddens me that this disease is not recognised in France, and doctors do not listen. In contrast, I appreciate the Institute for the excellent support I received, and I genuinely appreciate this new opportunity today.