Life on the line with seizures
Doctors help Torrington man through complicated, life-threatening epilepsy
Nicholas Duff was 17 when his first seizure hit him in his sleep.
“It was about a year before I had my second, and I didn’t have them frequently,” said Duff, who’s now 32, speaking of epileptic seizures.
But his disorder quickly got worse.
“It wasn’t till I was finishing my bachelor’s and going to grad school where they became a lot more frequent and violent and they were difficult to control. I will say it made life very challenging,” said
Duff, who lives in
Torrington.
The seizures came frequently, once every one to two months.
Duff couldn’t go to school. He couldn’t work.
Maintaining relationships was difficult.
At one point, he was admitted to the intensive care unit at Hartford
Hospital and put in a medically induced coma for 19 days.
“It’s terrifying because most epileptics don’t have an aura. They can’t tell when they’re going to have it,” Duff said. “For me, it just happened at random. I would never know. After a seizure is really the worst. … I would feel unbelievable fear and anxiety, often confused, issues with memory.”
Duff would suffer muscle pain and bleeding in his mouth from biting his own tongue.
That was then.
After a first try with a vagus nerve stimulator, which didn’t work, Dr. Mohamad Khaled and Dr. Patrick Senatus of Hartford Healthcare’s Ayer Neuroscience Institute placed a deep-brain stimulator into Duff ’s chest, with leads to a spot in his thalamus.
Duff hasn’t had a seizure in 3 ½ years.
“It’s incredibly liberating,” Duff said. “I felt like before I was in prison, and I’ve finally been released.”
“The recovery was tough,” Duff said. “But it was well worth it, because now I’m seizure-free 3 ½ years. I was able to get my license again. I have a healthy relationship. I just got married in November, and am living independently again.”
Duff is an office coordinator at the Bristol Hospital Wound Care Center and he plans to continue working on his master’s.
“In grad school, I was studying health psychology, and I was actually focusing on epilepsy and
mental health,” he said. “I wanted to understand and help others like me. Biofeedback was definitely my niche.
“And what I really love too is that after the procedure I had the opportunity to talk to other candidates about this and hear their story. And honestly, I think it was very helpful in giving them that push they needed to take that chance and go forward with the procedure.”
Duff wants to help other epileptics understand how debilitating the disorder is.
“I still want to help other people like me, because I have a unique perspective when it comes to epilepsy,” he said. “Not to understand medically what’s going on, but knowing it intimately, because I’ve lived with it. It gives me an opportunity to really help others, to say, I really know what you’re going through. … It’s a burden. I think a lot of people don’t understand what kind of disorder it really is, and how much control it can have over your life.”
The frequency of Duff ’s seizures was life-threatening, said Dr. Lisa Knopf, medical director of epilepsy surgery at the Ayer Institute.
“When you have three or more generalized tonicclonic seizures per year, you have a significant risk of dying of seizure-related death,” she said. “We don’t understand how a convulsion kills you … but we think that it causes respiratory and cardiac problems.”
Tonic-clonic seizures were previously known as grand mal seizures.
Knopf said the cause of Duff’s seizures was unknown. Before he was given the deep brain stimulator, he was given a vagus nerve stimulator, which “unfortunately had no impact on his seizures,” she said.
The vagus nerve stimulator is among several methods of treating epilepsy, which include removing part of the brain, and medications, according to Khaled. Epilepsy can present itself in a number of different ways, from mild to severe.
Knopf said Duff’s epilepsy is complicated. “We can’t totally tell based on his neuroimaging and his EEG or brainwave studies whether he has a generalized epilepsy or a focal epilepsy, so we don’t know very clearly whether the seizures are coming from one part of his brain or whether they’re starting all over in a generalized fashion,” she said.
Duff underwent a number of tests: “MRIS, PET scan, MEG scans, lots of different testing, trying to figure out where in the brain the seizures were coming from, and it was quite difficult to do so,” Knopf said.
Because of that, it was decided a resection, or removal of part of Duff’s brain, would not be possible, so the deep brain stimulation was chosen.
“We get an MRI of the brain prior to surgery, a very detailed specific sequence of the MRI of the brain,” Khaled said. “And we localize the anterior nucleus of the thalamus, which is the target that we’re going after. It’s a little bit bigger than a (grain of ) rice. But that’s how small the target is.”
The lead with the electrode at the end goes from the chest under the skin behind the ear and the skull into the brain.
“And we have to be very, very specific and hit the bull’s-eye basically,” Khaled said. “Otherwise, if we’re a little bit off, it’s not going to work. We have to be exactly in that spot.” The doctors also have to be sure they
don’t hit any blood vessels to avoid bleeding or strokes.
“I think it went perfectly well,” Senatus said. “It was entirely uneventful. We accomplished everything that we wanted to. We were able to acquire and place the electrodes at the intended target on both sides, and the post-operative images look great. And the patient did very well in the immediate post-operative period and was discharged home without any complications.”
The stimulator, like a brain pacemaker, delivers a current once every five minutes for a minute at a time.
“So Nicholas became
100% seizure-free, which is an amazing outcome for deep brain stimulation, a lot more than what you would typically expect,” Knopf said.
Duff was the first to receive deep brain stimulation at Hartford Hospital on Oct. 28, 2020. There have been seven more recipients since then.
“I think he was great patient,” Senatus said. “I think he started out with a very positive and hopeful attitude. He has a strong interest in science fiction and those types of things and so that background made him receptive to the
therapy and also hopeful so he was on board from the very beginning and that type of attitude is often very helpful for recovering, just having that positive mindset.”
Duff also praised his neurologist, who guided him through the process, Dr. Lawrence Hudson.
“I adore that man,” he said. “He’s remarkable. The best bedside manner. He takes me very seriously and reassured me that things were going to get better. And they did.”