Sacha Inglés Gomes dos Santos. Neuro-cranio-vertebral Syndrome. Filum Disease. Arnold-Chiari Syndrome Type I. Idiopathic Syringomyelia. Idiopathic Scoliosis. Multiple Disc Disease.

Published by ICSEB at 11 February, 2021

Link: https://www.youtube.com/embed/OeF3SkjIYYw
 
Surgery date: 04/06/2019
Filmed: 14/06/2019
 

 

This Angolan family explains their story in this video. Mr. Hélio Santos and Mrs Neide Gomes have three children. Sacha, eleven-year-old who is their second child, was diagnosed with Arnold Chiari I Syndrome when she was two. They say that at first they didn’t know that much about the disease and it was difficult for them to understand it. Sacha’s case was being treated by a group of doctors in Portugal who suggested she undergo surgery (Suboccipital craniotomy) later. However, the parents noticed that the girl’s symptoms increased and that, in the last two years, the girl had had a significant worsening.

Sacha could no longer sleep nor concentrate at school. “She stayed in school for 30 minutes and they would call us to pick her up again”, says the father. The situation at school got even worse because the children called her “sick” and that was when they started bullying her.

Ten days after Sacha’s surgery, Mrs. Gomes says her daughter is going very well and the changes are noticeable. “Now, she sleeps all the night which is amazing”. She also says that the girl no longer suffers from pain in her legs or arms and she has regained strength in her hands. “We are very happy and grateful to Marta, who has been very attentive, and to the institute. We felt we had to leave our testimonial,” says her mother.

The father explains that at first he was a little hesitant to take his daughter to the ICSEB. “Actually, we decided to talk because, as a father, I am a little more apprehensive and when I found Neide with all the information taken from the Internet, I had my doubts. What convinced me the most was the fact that I received such a quick response in Portuguese and also that I was able to read the comments and see different people and where they came from. All of this gave us the strength to come here. ”

At the end of the video, the mother asks Sacha if she had noticed any changes and the girl answered yes, that her situation had changed a lot. “Would you like to go back in time?” her mother asks her and Sacha quickly replies no. “Are you happy?” and Sacha replies, “I am very happy”.

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1. (*) Royo-Salvador, M.B., Fiallos-Rivera, M.V., Salca, H.C. et al. The Filum disease and the Neuro-Cranio-vertebral syndrome: definition, clinical picture and imaging features. BMC Neurol 20, 175 (2020). https://doi.org/10.1186/s12883-020-01743-y , https://rdcu.be/b36Pi