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Sarah Barbier. Neuro-Cranio-Vertebral Syndrome. Filum Disease. Arnold Chiari Syndrome type I. Idiopathic Scoliosis. Multiple disc disease. Anterior sacrococcygeal dislocation.

Published by at 2 September, 2022

Surgery date: 23/3/2021
Filmed: 2/5/2022

My name is Sarah and I am 30 years old. I was diagnosed of scoliosis at the age of 14 and I underwent surgery (arthrodesis) in France. 4 years after my arthrodesis, I had many complications and I had to have it removed and subsequently my symptoms worsened. In addition to scoliosis, I started having migraines every day, vertigos, I lost sensitivity in the entire left side of my body and a lot of fatigue. I had been fighting for two years. I had many scans and after two years they discovered that I had Arnold Chiari malformation. None of the clinicians I saw offered a treatment. I felt very abandoned because I felt that my symptoms were getting worse and I expected many complications in my future.

I started researching on the Internet and then I discovered the Institut Chiari in Barcelona. I was intrigued when I found out that there is a relationship between scoliosis and Arnold Chiari malformation – which made sense – but the doctors in France didn’t see it. I started to get in touch with different French patients who had undergone surgery for Filum disease and, a year ago, I decided to undergo surgery as well. I was very happy with the team. They are very professional. The pre-operative visit was exhaustive and took a long time. They cared and listened to all the symptoms I have from head to toe.

A few hours after the surgery, I could feel 80% of the left side of my body that had lost sensation for years, so it was quite a miracle. I also felt less tension in my body; I knew that my Filum was too tight. I tried to take good care of myself, not to carry too much weight, following the Doctors’ recommendations.

I have just had my 1-year postoperative check-up: since surgery I haven’t had a single migraine, which is quite a miracle, since I used to have daily migraines. I feel much better, straighter, I have regained my energy, I am a little less sensitive, before I had a feeling of numbness every day and now I have it but much less. Sometimes it happens that I notice my symptoms but only when I accumulate a lot of fatigue. I can only see positive results from this surgery. When comparing my MRIs, there are currently no major changes, I continue with my scoliosis and Arnold Chiari but at least they have not progressed and, above of all, there are many symptoms that have decreased and this is already very miraculous. I am very happy but at the same time disappointed because there is not much information about this malformation/disease, about this institute. If I had known about that before, I could have avoided many things and it is for this reason that I am sharing this testimony today, which I hope will reach other people.

The main goal of this surgery is to stop the progression of disease. Before surgery it is not possible to know if there will be improvements so, since in my case the progression of the condition stopped and I experienced improvements as well, it was a big surprise and I am very happy. It is a “super” institute; I greatly appreciate the work done by Dr. Royo and all his team.

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