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A Queensland teenager suffering from debilitating epilepsy is now seizure free, following brain surgery during which he remained awake.
Eighteen year-old Adam Barry is sharing his story during Epilepsy Awareness month to give other young people in his position hope for a better future.
Adam underwent the complex surgery in October last year at Mater Hospital Brisbane with neurosurgeon Dr Jason Papacostas, after medication failed to control his epilepsy.
“My epilepsy started when I was in year one. I was able to manage it through most of school but as I got older my epilepsy got worse,” Adam said.
Nurse Practitioner in Epilepsy Peter Jones described Adam’s seizures as profound.
“They were often from waking and he would flip over fully and bang his head repetitively into whatever was beneath him. It was cognitively disabling and incredibly socially disabling.”
As a scrub nurse in Mater’s neurosurgery theatres, Adam’s mum Melissa told a colleague how frustrated she felt in being unable to get answers for Adam, with his medication failing.
“She introduced me to Peter Jones in Mater’s epilepsy team. I asked him if anyone could help my son and he pointed to Dr Dionisio,” said Melissa.
Epileptologist Dr Sasha Dionisio, along with Peter Jones and neurosurgeon Dr Jason Papacostas offered the family new hope through surgery for epilepsy.
“Adam’s MRI scans had been normal so we undertook a Stereo-EEG (SEEG) procedure, inserting thin electrodes into the brain at various points. The SEEG detected the seizure onset site. Unfortunately it was in the area of the brain that was responsible for speaking. The only way we could proceed was for Adam to remain awake during his brain surgery to reduce the risk of permanent speech damage,” said Dr Dionisio.
Adam said he felt hesitant about the surgery when it was first explained to him.
“But I kept saying to myself I’ve dealt with this since year one, do I really want to deal with it for the rest of my life?”
Dr Jason Papacostas explained the team’s process during the awake craniotomy.
“During the craniotomy I placed a grid—a sheet of electrodes—against Adam’s brain. Dr Dionisio’s team would then stimulate the grid so that I could mark on Adam’s brain exactly where language was coming from,” said Dr Papacostas.
Peter Jones worked closely with Adam during the surgery, along with two speech pathologists.
“I held up flashcards of things that Adam is interested in—Star Wars, Lord of the Rings, Aztec history, the Egyptians—and asked Adam to tell me more about it. If they stimulated that part of the brain and Adam’s speech was affected, then we knew we couldn’t remove that part of the brain.”
Reflecting on the surgery, Adam is surprised with how well he handled it.
“I thought I would be one of those people that might freak out in it but for some reason I felt calm all the way through. I’d built a good relationship with the team and trusted them.”
Melissa said the three hour wait for surgery was ‘enormously stressful’.
“It was the longest few hours of my life. I just about leapt on them when he came out; Adam was talking when he came into ICU—it was so emotional.”
Melissa said in some ways it was harder, knowing exactly what was happening inside theatre.
“But the other side is knowing all of the people in theatre and having such confidence in the team. I’ve seen them do it before and I know they are the best at what they do.”
Peter Jones explained the surgery was the most levelling experience he has ever had while working in healthcare.
“I was in tears at the end. I was overcome… being twenty centimetres away from Adam, under a shroud in the operating theatre and Adam’s fist-pumping and high-fiving me, while remembering objects on the flashcards. It was absolutely incredible.”
For Melissa, Mater’s Advanced Epilepsy team has made a huge impact on the family.
“It’s like one of those ripples. They think ‘I’ve just healed this person’ but they’ve actually healed the whole family. Every day Adam is getting back to the guy that we knew rather than the person who was consumed by his epilepsy,” said Melissa.
“All you can do is take these options when they’re given to you and see. This surgery has given Adam back his life and put Adam back in our lives again.”
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