Improving Quality of Life for Locked-In Syndrome: Insights from Neurologist Dr. Marouan Missaoui

2023-07-20 18:32:12

Par Juliette Voisin
Published on 20 Jul 23 at 20:32 updated on 20 Jul 23 at 20:43 See my news Follow La Presse de la Manche Doctor Marouan Missaoui, neurologist at the Cotentin public hospital. (©La Presse de la Manche)

In August 2021, the life of David Corbet changes. This 46-year-old Cherbourgeois and father of two children suffered a stroke.

“When he woke up, he could only communicate by blinkingremembers Sandrine Baudin, his partner. We were told to expect the worst… »

The neurologists then detect serious sequelae, a rare syndrome called confinement, also known under the name of locked-in syndrome (LIS).

To learn more about this syndrome, Dr. Marouan Missaoui is a neurologist at the Pasteur-hospital in Cherbourg-en-Cotentin (Manche) answers questions from The Channel Press.

Actu : What is locked-in syndrome?

Doctor Missaoui: Generally, the patient quickly presents with paralysis of all four limbs. The patient will then have difficulty, or even an impossibility, in speaking, swallowing and holding his head. On the other hand, consciousness, cognitive and intellectual faculties are preserved. Just like comprehension and hearing. The only possible movement is that of verticality of the eyes. Patients communicate only by vertical eye movement and sometimes blinking.

What are the causes ?

D. M. : The causes are essentially cerebrovascular accident (CVA) of the brainstem. This syndrome can also occur after severe head trauma, brainstem tumors or during certain rare infectious causes.

In August 2021, David Corbet, a 46-year-old resident of Cherbourg (Manche) and father of two children, suffered a stroke. (©DP)

The locked-in syndrome are not all alike

Can there be improvements?

D. M. : Locked-in syndromes are not all alike. There can be very severe forms, with complete paralysis. During the acute phase, mortality is high, around 70%. These people will require resuscitation. Musculature, breathing and swallowing may be defective. If they come out of this critical phase, an improvement is expected. But it’s not always a dramatic improvement.

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How to improve their quality of life?

D. M. : These people understand and hear, but unfortunately cannot speak. They are perfectly conscious and need to communicate. The whole therapeutic challenge for these patients is to keep a social life, that is to say a communication with their environment and those around them. Today, there are technological advances. Research is looking at communications between the brain and the computer. Software is created to translate eye movements into language. Afterwards, a lot of functional rehabilitation and speech therapy work is needed.

Hygiene of life and sleep is essential

How to avoid strokes?

D. M. : There are modifiable risk factors: tobacco, obesity, blood pressure, diabetes… The hygiene of life and sleep is essential. Unfortunately, there are factors that cannot be modified, including genetics. Some families have more strokes than others.

What are the symptoms of a stroke?

D. M. : The most common symptoms are weakness on one side of the body, facial deviation, language problem, slurred speech, loss of visual field, sensory disturbances (numbness). By definition, a stroke sets in suddenly. The pain is less typical of a stroke. Strokes don’t hurt.

What to do in case of symptoms?

D. M. : The person or his entourage must call 15 as soon as possible. Every minute counts. After their visit to the emergency room, after a CT scan and an MRI, the patients are taken care of in the cardiovascular intensive care unit.

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