A Quebec-area boy suffering from a severe form of epilepsy is about to undergo delicate and complex brain surgery that could relieve his many daily crises.
“It’s one last chance to improve his quality of life,” says his mother Meggie Perron, who thought long and hard before having her son undergo this “irreversible” procedure at Montreal Children’s Hospital (MCH).
“The hardest thing is the helplessness. If I stopped seeing him suffer now, it would be a great victory,” adds the mother of the family from Pont-Rouge.
Up to fifty seizures a day
9-year-old Samuel Méthot suffers from Lennox-Gastaut syndrome, which causes him to have numerous epileptic seizures every day.
In the early years of his life, he experienced between twenty and fifty seizures a day, causing him violent protrusions.
More recently, Samuel is sometimes the victim of long crises that can span 48 hours, requiring emergency hospitalization, his mother says.
In addition, no drug improves his condition. He is “drug resistant,” emphasizes his pediatric neurologist, Dr. Bradley Costerman from Children’s Hospital.
Today, to reduce the frequency and intensity of his seizures, he will undergo a rare neurosurgical procedure called a callosotomy.
The “corpus callosum”, which connects the two hemispheres of the brain, is to be severed.
Long day
The day promises to be long and agonizing for Samuel’s parents as the surgery is performed from 6am to 6pm.
“I don’t know how to cope. We’ve got nerves of steel, but my type needs me, I have to be positive,” says Ms. Perron.
“We couldn’t turn down that option because we’ve spent our entire lives wondering what it would have been like,” she continues.
Luckily, Samuel shows great resilience, she says. “He’s the one who relaxes me with his calm. He’s very brave,” adds the 36-year-old.
regain the ground
Due to the constant cerebral electrical activity in his brain, Samuel shows signs of developmental delay. He does not speak and has some motor problems, among other things.
“It’s like Samuel has a thunderstorm in his head all day. Which prevents him from making profits and progressing,” explains Dr. Osterman.
For Ms. Perron, the ultimate goal of this operation is to finally give Samuel the floor.
“He was babbling around about 21 months old, but then the numerous epileptic seizures started and made him lose his knowledge,” she says.
An operation rarely performed anywhere in the world
Performed in highly specialized epilepsy centers across the country, the callosotomy is a rare procedure intended for a “very specific” clientele.
As a result, this type of procedure has only been performed three times in the last decade at the Montreal Children’s Hospital (MCH). Neurosurgery was performed at Sainte-Justine University Hospital Center about the same number of times during the same period.
It is a specialist neurosurgeon, Dr. Roy Dodley who will practice this long procedure on Wednesday, Samuel.
“It’s a rare operation in the world. It fell into disuse by the 1940s, but then disappeared with the advent of several drugs and other neurosurgical procedures. However, it’s starting to come back. You see it in patients with a very specific EEG (electroencephalogram), like Samuel,” says pediatric neurologist Dr. Bradley Osterman of the Children’s.
paraphrase epilepsy
By severing the corpus callosum, which connects the two hemispheres of the brain, the surgery aims to prevent electricity from spreading from one side of the brain to the other.
In Samuel’s case, the epileptic focus would be identified in the right hemisphere of the brain and then spread to the other side, where language in particular resides.
“Right now, his sick hemisphere is constantly contaminating the healthy hemisphere,” says Dr. Osterman.
step towards healing
The intervention is in fact a “step” towards Samuel’s eventual recovery. So the callosotomy has a 20 percent chance of relieving him of his cramps completely, the specialist explains.
“It’s not huge, but then we have a better chance of altering Samuel’s quality of life by unmasking the specific focus [de l’épilepsie] to be treated in a more targeted manner. If you can identify the focus, you increase your chances of recovery to 75-80%,” he says.
The procedure should also elucidate the causes of Samuel syndrome while biopsies are performed on the removed tissues. “We don’t know why Samuel has this catastrophic epilepsy, which has a huge impact on his development,” asks the expert.
risks
However, this delicate procedure is not without risk, warns the neuropediatrician.
Although it is “extremely” rare in children under the age of 10, “disconnections syndrome” was observed in Samuel after his operation.
“It can affect memory, language or coordination. Sometimes it’s temporary and can only last a few months,” says Dr. Osterman.
In addition, the risks of infection, cardiac arrest (ACV) and bleeding are estimated to be between 2% and 3%, the doctor supports.
Lennox-Gastaut Syndrome
- A severe form of epilepsy that mainly affects children
- Many affected children do not respond to medication
- Frequency and intensity of seizures very important, even daily
- Generalized epileptic seizures, which are seizures that affect all parts of the brain and result in developmental delays
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