Maria Do Socorro Dos Santos. Neuro-Cranio-Vertebral Syndrome, Filum Disease. Descent of the Cerebellar Tonsils (Arnold-Chiari Syndrome Type I). Multiple Disc Disease.

Published by ICSEB at 27 April, 2018

Surgery date: 11 January 2018
Filmed: 25 January 2018

In this video, Cícera dos Santos tells the story of her sister, Maria do Socorro, diagnosed with Arnold-Chiari Syndrome Type I six years ago and operated by means of suboccipital craniotomy (SOC) four years ago. After this SOC surgery, the patient got even worse: intensification of the pain, breathing difficulty, loss of strength in the upper and lower extremities and many other symptoms. Due to the deterioration of her clinical history, she had to start using a wheelchair to move up since August 2017. In addition, Maria do Socorro lost her voice (*) in April of last year. For this reasons it is her sister, Cícera, who is telling her story in this video.

Cícera explains that, after the craniotomy, her sister had started investigating about her pathology on the Internet and that she had found the ICSEB and was like seeing the light at the end of the tunnel. From that moment, both of them started a big group effort to make the trip to Barcelona viable.

Two weeks after the ICSEB’s team did the surgical treatment, Cícera says that both felt really happy because “the improvements were exceptional”. Cícera affirms that both knew that the objective, with the Filum System^® method, was to interrupt the progression of the disease and that improvements of the symptoms are different in each patient, but her sister’s improvement was very evident. One of the first changes Cícera observed was the recovery of the sensitivity in the patient’s lower extremities with an improvement of the circulation. “Her legs were freezing. On the same day [of the surgery], still in the hospital’s bed, I approached her to help her to get out of bed and I already felt that the temperature of her legs was normal”. Also, she describes that Maria do Socorro’s feet, before the surgery, were atrophied, inwards. A few days later, the improvements were remarkable. “One of her feet has improved by 100% and the other one still needs to be exercised. We know that she will need, from now on, physiotherapy and rehabilitation, but with many possibilities of recovery”.

Cícera also reports that her sister’s headache had disappeared since the day of the surgery. “It really has been worth it, we have had a wonderful experience and, without any doubt, we recommend it to those who have the same problem- those who can and who have this opportunity – to fight for the possibility of coming here to undergo this treatment. They do a very serious job and really well done. The surgery is excellent, they have very high standard professionals and the patient care is unbeatable.”

To conclude, both Cícera and Maria do Socorro have made the most of this video to express their gratitude. “We only have gratitude for all the medical team, that performed the procedure, and for Marta, who welcomed us in such a lovely way. Due to the fact that she is from Brazil, we have felt like home being here with her. We thank her very much (…). We will always go to wherever it takes to give our testimony: Me, as a sister, and she [Socorro] as a patient. ”

Also the ICSEB would like to thank both of them for the great example of overcoming and strength that you have given us. Thank you so much!

(*) Update: Maria do Socorro regained her voice on the 24^th March 2018, as the patient’s family informed us.

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