NOTL's Eric VanNoort happy and recovering after operation for epilepsy 

Throughout the last four years of devastating seizures, lengthy hospital visits and multiple brain surgeries, Eric VanNoort says the worst part of it all was not being able to drive and losing that independence.

But that could all change, after his latest successful surgery.

VanNoort, a 23-year-old Niagara-on-the-Lake resident, returned home from the hospital Dec. 9 after having a right front temporal craniotomy for epilepsy, a disease that’s caused him to have more grand mal seizures than he can count.

Since the seizures started in 2016, VanNoort has had to give up his licence and has spent more than a month in the hospital.

Now, it will be about a year before he’ll know if he’s seizure-free, but VanNoort and his family are hopeful for the future. The surgery has a 40 to 50 per cent success rate.

VanNoort, who has stayed positive throughout it all, says the interesting part of his latest surgery is that he was home just two days after having a piece of his skull cut out and put back. He went in for the surgery on a Monday and arrived home on the Wednesday.

“I was discharged in stable condition,” VanNoort said during a phone interview Saturday.

The surgery isn’t very common, he said, especially in Ontario, where only about 30 such operations are done in a year by just one neurosurgeon, Dr. Taufik Valiante.

“And he’s a super, super solid guy,” said VanNoort.

Before the surgery at Toronto Western Hospital, VanNoort presented Valiante with a cheque for more than $13,000 to go toward epilepsy research. Valiante is part of a foundation called Neuromodulation Research Fund which researches the disease.

The money was raised through a fundraising campaign by his mother Sharon VanNoort.

Eric said he was awake for a lot of the surgery — though, with heavy pain medication he remembers very little of it.

“The weird thing is remembering specific noises, like medical tools, like obviously hearing them talk. I remember seeing the anesthesiologist, who was basically there making sure that I was pain-free.”

The surgery was painless, minus feeling a bit of pressure when they started to open up his skull.

“They told me from the beginning that once they start touching the brain, I wouldn’t even feel it,” he says. “I didn’t feel anything.”

“The only feeling I guess I can kind of remember is the way that they cut it open. They cut it on a curve, then they open it like a flap. And then they cut the skull out. I remember the pressure between probably my skin and everything that they had covering across my face.”

VanNoort’s previous brain surgery, last February, was to find out if he was a candidate for the craniotomy. He was in the hospital for more than a month, from Feb. 7 to March 8.

“That was an awful time. I tell you that right now … just because I was there so long.”

His craniotomy was exactly 10 months later.

“So this last time was for monitoring. So they had 14 electrodes, they had seven in each side. And I was basically just there. They slowly took me off my medications and I was waiting to have a seizure. So the electrodes that were in my head would monitor my brain activity and record the brain activity.”

“I had to go in by myself. Because of COVID, nobody was able to come in with me. It was weird walking in there by myself to go in there for a craniotomy.”

As for how he felt heading into surgery, VanNoort had one word: ready.

“When I first talked to people about the surgery in the first place, I wasn’t at all interested in doing it. But I remember I talked to my neurosurgeon, and when I spoke to him he asked me, ‘What changed your mind about the surgery?’ And I remember I said to him, ‘Well, if it could possibly help, I’m ready to do anything.’ I just want my life back and everything. I want to drive again.”

What helps him stay positive, he said, is the support of his family and friends, and “looking towards an end game” when he may be seizure-free.

He said the surgery is pretty safe, with small chance of a stroke or hemorrhaging, but what concerned him more was the possibility of having a seizure during the surgery, which he said doctors told him has happened before.

“That’s why they have an anesthesiologist there. And obviously, there was probably eight or nine doctors, nurses,” he says.

Since he’s been home he said he’s received lots of support from friends, though he’s laying low and taking it easy.

Right now, the “entire right side of my face is swollen. I’m not really feeling 110 per cent, so I’m not really seeing a lot of people.”

He said it will be four to eight weeks until he’s healed. “Probably longer,” he said, as he has 49 staples in his head.

“Thankfully I have a good family, that’s for sure. Because if I wasn’t with the family I do have, I would be on the streets or dead probably,” he said.

One struggle he’s faced is being denied disability benefits twice, even though he isn’t working due to the debilitating seizures and surgeries, not to mention the possibility of having a seizure while at work.

“There are a few (seizures) that I had at work so I felt I started to become like almost a liability in the workplace … next thing I’m gonna have a seizure and pour coffee on guests or something like that.”

He said he’s still unable to go on disability.

“And when I spoke to my family doctor about that, right away he said ‘get a lawyer.’”

He sings praises of the doctors and nurses that have worked on him. “Toronto Western has to be one of the greatest hospitals out there,” he said.

Despite his struggles, VanNoort is in good spirits.

“You’ve kind of got to look at it in a positive manner and laugh at yourself, too, sometimes.”

If all goes well over the next year, VanNoort said he wants to get a Toyota Forerunner — a change from his green Camaro.

“I love driving. I had my fancy sports car, with the Hot Wheels symbols on it. I’m a really big kid.”

“I got in a lot of trouble in that car. But that’s OK. Got in a lot of trouble, had to pay a lot of money for stupid stuff I did.”

Sharon VanNoort said she’s proud of her son and is happy to have him back home safe.

“Right now I am so happy to have him home. It surprises me — well, I shouldn’t say I’m surprised — I think I have one of the strongest young men that I know,” she said.

She said it was particularly hard not to be able to be by his side when he went to surgery.

“Getting that phone call at four o’clock that everything went great was pretty awesome. They said neurologically everything went really well and he could move his extremities, he was talking,” she said.

“Once we heard that it was a huge relief.”

She said she’s taken some time off work to stay home with Eric while he recovers.

“You couldn’t ask for anything better. We just have to wait now and see if it worked. The whole community has been with us, with prayers, vibes, whatever, good energy. We’ve been getting it, so this has got to have worked.”

“My husband and I are going to save up now. We’re going to start saving for him for a car.”