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GINEVRA MARI. Neuro-Cranio-Vertebral Syndrome, Filum Disease, idiopathic Syringomyelia.

Published by at 7 July, 2017

Surgery date: 12/1/2016
Date of filming: 8/5/2017

Ginevra Mari is an 18-year-old Italian patient who, in her mother’s company, tells us of her experience with the condition, from the first mild discomforts through to the progressive worsening to the surgical procedure of the Sectioning of the Filum terminale. She wanted to take advantage of her visit to the ICSEB for a check-up appointment one and half years after the surgery to record this video-testimonial and share her story.

She reports that she had mild discomforts since she was little, especially in the right body half and also in the head. She never paid too much attention to them and thought that they must be due to growth.

At the age of 15 she started to suffer with strong headaches, loss of strength in the right arm, not being able to walk well, she had balance problems and discomfort in the right leg. She then decided to see an orthopaedist thinking that her problems could be due to posture; but apparently nothing had to do with posture.

She then started her long journey of consulting with different physicians all over Italy without finding an explication for her problems and furthermore she found herself worrying, as she did not know if her problem was psychological or physical. In late September 2015 she started to have stronger discomforts in her arm that kept on getting worse over time until it was almost fully paralysed. She went to art school (high school) and could not sign her name or draw; she could only sit the oral tests. She continued her pilgrimage from doctor to doctor without reaching a conclusion until she was hospitalised in Rome and diagnosed with syringomyelia with a magnetic resonance scan. Ginevra did not even know anything about the condition and searching the Internet, she found a connection between many of her symptoms and the disease. Her for someone who could help her continued, as she kept on getting worse: she had one body half almost paralysed. She spent her time in bed, without a social life and having had to give up school.

One day, not knowing what else to do, she did an online search of the name o her disease and found the Institut Chiari de Barcelona. After reading the testimonials published on the website and speaking with a few patients, she decided to send in her test results and to make an appointment. It was 23 December 2015, and the doctors at the Institut Chiari explained to her that if she did nothing, her condition would get even worse, so she took the decision to undergo surgery. She underwent the procedure for the Sectioning of the Filum terminale on 12 January 2016. She tells us that the improvements immediately after the surgery were unbelievable, with a great happiness for all of her family: she started moving her right arm and regained her ability to write. Some of the problems are still there, like the headaches or the electric currents, even if only on the right hand side. She can now move her arm very well and is drawing and sewing again. Later, in Italy, she underwent other pretty complicated surgeries but the improvements from after filum terminale procedure persisted and she is very happy with that: “I am very happy with the outcome, I would have the operation a thousand times over”, she tells us.

Ginevra’s Mom tells us of the long and difficult journey that the whole family had to endure, with pain but at the end with hope, because when they arrived at the Institut Chiari a new world of recovery opened up for them. She says: “If you have any doubts, send in your tests results and the doctors will be able to answer them. If you have to deal with this experience, do it with faith, because a year and a half after the surgery we can only tell you how well it went.”

With this video, Ginevra and her mother want to express their gratitude towards Dr. Royo, Dr Fiallos, Dr Salca, Gioia Luè and Elena Vitturi, toward the entire Institut Chiari because thanks to their tenacity, Ginevra is in safety.

Ginevra: +39 327.2656160
Mother: +39 324.7987942

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