Par
Louise boutard
Published on
1 in 200 people is affected by this disease and yet it remains very little known. THE essential tremors were highlighted by La Chanteus Clara Pariani who spoke of being concerned during an interview for Konbini May 14, 2025. But what is this disorder precisely? Sandrine Cochennec was operated on Twice in Rouen (Seine-Maritime) because her tremors became too invasive. She told us.
“We said it was nervousness”
For Sandrine Cochennec, essential tremors have started Around the age of 11. “With puberty. It was visible, but not disturbing. My mom had to have this disease because she was trembling, but she did not never been diagnosed. It was said that it was nervousness, ”explains this resident of Vexin-sur-Epte (Eure), 59 years old.
For many years, Sandrine was trembling with both hands, Without knowing why. “It was my particularity,” she says. “We think you are drug addicts, alcoholic. I was told by laughing: you don’t have your dose. »»
Around the age of 30, it falls on the description of essential tremors. This is a degenerative neurological disease. “On the internet, I joined A very interesting group. At the slightest fear, immediately, there is an answer with testimonies. »»
The group was created by the APTS (association of people concerned by the essential tremor), which aims to listen and advise patients. “We often speak with people in diagnostic, because even some neurologists do not know the diseasetestifies to Rouennaise Annie Le Brun, president of the association. And then there are the parents of young children, who feel helpless when we tell them that It is a degenerative disease. That is, it can be stable for years, but It’s not going to work out. »»
The tremors have a very negative image in society, people ask if it is linked to alcohol, if we are afraid. It creates a risk of withdrawal, some patients are afraid of going to the restaurant, or even to hold a drink in public. I remember a man who told me that he was very afraid when he should pass the ring to his wife’s finger for his marriage. Many gestures in everyday life become complicated.
“It is a very little known disease, but it touches approximately 300,000 people in Francemuch more than Parkinson, including 30,000 in a disabling form, explains Annie Le Brun. The majority of patients are over 50 ”.
“What to do when you can’t do with your hands?” »»
In 2016, it is a drama that changes the tremors of Sandrine Cochennec with the death of her grandson, at 14, in a road accident. She sees her tremors worse at once. “There, it has become disabling. Especially the left hand. »»
Very fluctuating tremors
The essential tremors most often touch the hands, but also sometimes the head, the voice or the legs; both in men and women. They arrive at the effort and worsen during strong emotions, in case of fatigue, during the rules, or with the taking of antidepressants. “They are very fluctuating,” says Annie Le Brun.
Essential tremors are due to cerebellum dysfunction which sends poor information to the brain. There are several treatments: the most common is to take beta-blockers every day. There are also electrodes to be placed in the brain for deep brain stimulation, this is the solution chosen by Sandrine Cochennec. Finally, a new treatment offers high intensity focused ultrasounds (HIFUT) to remove part of the thalamus responsible for TE. In France, we can only carry out this operation in Paris.
Once ready to work again, she realizes that it will be Impossible to resume your work as a fishmonger. Like 25 % of people with TE, it considers the Professional retraining. “I was a merchant for 35 years, it’s as if we were all the time spectacular. It was unmanageable. But I didn’t see what to turn to: what to do when you can’t do with your hands? ».
“I was more afraid of my tremors than the operation”
We then offer him an operation which consists in installing a tremor regulation system directly on the brain.
I had heard of it, but it scared me because it is a long operation without anesthesia. Finally, the neurologist convinced me that I was more afraid of the tremors than the operation. Peel the vegetables, hold a glass of water: at that time everything was very complex.
Sandrine is directed to le CHU de Rouen. In February 2024, it was operated on for the left hand. The operation lasts eight hours, of which only one with anesthesia. “But we don’t see time passing. When you don’t stimulate you, it is absolute comfort. I was on a hot water mattress. They didn’t shave my head, only a square, I didn’t have an aesthetic concern after the operation, specifies Sandrine. I still had 50 staples on the head ”.
Following the operation, she immediately notes the effects on her tremors. After three months, she will adjust the settings to her neurologist. “He is the one who has access, he prefers that I don’t care about that. »»
Barely a year later, it is the turn of the second operation, for the right hand this time. “It was even more comfortable,” she said. THE Two operations have been reimbursed by insurance and social security. “I have not poured a penny,” says Sandrine Cochennec.
Neither her two daughters nor her grandsons seem concerned by essential tremors which are transmitted by inheritance in 50 % of cases.
Follow all the news in your favorite cities and media by registering for my news.
