Verified on 04/08/2022 by Guillaume Tabbara, Journalist
Chiari malformation affects one child for every 25,000 births. At the time of her 20th birthday, Garance* discovered that she had it after experiencing strange symptoms. His life takes an unexpected turn. Testimony.
During the entire testimony, the first name was voluntarily changed for the sake of anonymity.
“I felt like it wasn’t normal, it was like my organs were moving in my head.”
The Chiari malformation described by an affected person “The Chiari malformation is when the cerebellum is positioned too low in the head, which compresses everything inside a bit and prevents the cerebrospinal fluid to circulate properly. It’s not fatal but it can have very serious consequences if it’s not treated in time, such as loss of sight orparalysis.”
explains Garance. Now 30, she has taken a lot of perspective on the situation, but admits that she never managed to type the name of her syndrome on Google,
“which always proves a certain fragility.” To treat the Chiari malformation, there is currently no other possibility than surgery. “The goal is to make room, so that the cerebellum can act normally and the nerves are decompressed. For that, you have to break bones. They even took mycerebral tonsils.“
says Garance, who was only 20 years old when the doctors detected his malformation.
A native malformation, but detected much later“I was on an internship, with a boss who put a lot of pressure
. I started having weird sensations: compressions inside my head, the feeling of having my skull about to explode. Sometimes I couldn’t feel my legs while lying down or I felt like I was drunk without having had a drink.”
Due to her professional situation, Garance’s doctor believes that it is all due to stress and refuses to give her an exam. “I fought to be prescribed aMRI I felt that it was not normal, it is as if my organs were moving in my head.
After the examination, the report is quickly made when the doctors observe the positioning of the cerebellum of Garance.
“It’s a rare syndrome, my doctor didn’t even know about it. I’ve had this malformation since birth, but the symptoms happen a bit randomly. Some live to be 50 without knowing they are affected.”
Initially, acceptance and denial…“Before the operation, I didn’t stress that much. I was even relieved, because I finally knew what I had. I learned that it was not so serious, but I could not stay weeks like that, it was necessary to operate.
says the young woman. The surgery went without complications and today,
“You can’t even see that I had surgery on my recent MRIs anymore.”
The young woman’s check-ups never revealed any new problems. However, the situation is complicated: the pressure that Garance is under is too great.
… then a painful psychological journey “After the operation, it was horrible. I lost a lot of weight, I weighed 42kg. We shaved part of my hair, I felt bad about myself. As a young adult, even a teenager, Garance had a busy social life and overnight, “I can’t do anything anymore, I don’t go to class anymore, I’m lying in bed for weeks having to deal with enormous fatigue. Besides that, I experienced abreakup .”
A year later, Garance returns to the hospital to close a breach in her spinal cord.”It’s called a blood-patch, and the pain is excruciating. They come to prick in the back with a big needle to send blood. The worst thing is that for me it was useless.”
“I’m used to taking myself in hand, not letting anything go, so I surrounded myself with doctors. I was very anxious for a year after the operation, I saw a lot of specialists to get back on my feet, including a psychiatrist who helped me a lot. In addition to psychological assistance, Garance decides to work alone, she embarks on sophrology and meditation,
“what made 90% of my symptoms disappear, it changed my life.”
Silence, then acceptance
(photograph of Garance’s scar after the operation) “For 4 years, I didn’t want to talk about my operation, I told myself that no one would understand me. Today I like to talk about it, I would even like my hair not to hide my scar, so that people can ask me questions.
This 15 cm scar that runs along the back of her head, Garance is proud of it:“She never complexed me, I find her beautiful. Anyway we don’t see it, sometimes it even becomes invisible to me, which bothers me a bit, it minimizes what I went through.
“Today, everything is going well”“I’m happy to say that today I’m doing well. At the time, I wish I could read testimonials saying things are going well. On the Internet, we often read the worst horrors.”
“glad to say that everything is fine – if I can reassure people who have the same defect as me, that’s great.”100 % Readers found this article helpful
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TESTIMONY. Garance lives with Arnold-Chiari malformation
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