By Melissa Cunningham, The Sydney Morning Herald
Adam Daly was deemed untreatable. Doctors were sympathetic and kind, but told him there was nothing they could do to stop the debilitating seizures that left his brain foggy and rendered him unconscious and in a hospital bed for days.
After suffering a head injury when a water tank exploded at a worksite 14 years ago, the father-of-two was left with unpredictable daily, drug-resistant seizures. He was unable to work full-time and his wife Catherine became his career.
He spent a decade trying different combinations of medications to control his seizures that were so severe he experienced status epilepticus, a medical term used to describe clusters of uncontrollable seizures where the brain is unable to recover in between.
Mr Daly missed years of milestones: his children’s birthdays, weddings and family events. He regularly injured himself during seizures, dislocating his shoulders and once smashing his face on the concrete outside his home.
“I had tried every medication under the sun and nothing worked,” the 40-year-old said. “I was told to accept that this would just be my new normal.”
But Mr Daly’s life changed after he was selected as one of the first people in the world to be included in a small trial for a new implant treatment for people with complex neurological conditions.
About three years ago, doctors at St Vincent’s Hospital in Melbourne implanted a pump into his abdomen with a small tube under the skin that sent a type of sodium valproate, an anti-convulsant drug used for complex seizures, directly into a cavity in his skull.
The medication is injected into an intra-abdominal pump and then travels via a catheter into the fluid-filled spaces in the centre of the brain.
This allows the drug to go directly to the source of the seizures and avoids any previous unpleasant side effects or absorption barriers that come with taking the powerful drug as oral medication.
The results of the trial, which has previously been published in the prestigious Lancet Medical Journal, were striking.
All of the patients experienced about a 77 per cent seizure reduction and extended periods without any seizures at all.
Professor Mark Cook, the head of neurology at St Vincent’s and a global pioneer into epilepsy research who led the initial trial, said it had been such a game-changer for patients that the second phase of the trial was now being rolled out to dozens more Australians who suffered debilitating, drug-resistant seizures.
“It has been a life-changing experience for these patients, no question,” Professor Cook said.
“You can’t measure that sort of benefit easily. The difference it has made to someone’s life when they have been incapacitated for such a very long time and they are suddenly able to do a lot of normal day-to-day activities, it’s hard to express the significance of that change.”
Professor Cook said one of the most curious aspects of the research was that even if the drugs had not worked orally for patients, they still had dramatic results with the abdominal pump.
Up to 70 patients will take part in the second phase of the trial, which was launched at St Vincent’s Hospital and the Centre for Medical Discovery, Australia’s first collaborative, hospital-based biomedical engineering research centre, this week.
Much has been learned from the first trial, including the most effective dosage of medication. The abdominal pumps are now also purpose built rather than being re-purposed pumps made for other medical uses.
“You don’t think of a pump in your belly being the answer to epilepsy,” Professor Cook said. “But the results of this technique have been revolutionary.”
Professor Cook said about 1 per cent of Australia’s population had chronic epilepsy and for reasons researchers are yet to fully understand about 40 per cent of those people experience drug-resistant seizures.
“It is an awful and debilitating condition and despite it being very common we don’t discuss it anywhere near enough,” Professor Cook said.
There are plans to expand the trial to the United States and Israel in coming months.
Mr Daly hasn’t been admitted to hospital in more than a year and while he still experiences the feeling he used to get before seizures – known as an aura – he has not suffered a major seizure in more than six months.
The sensation is a common phenomenon among people with epilepsy and for Mr Daly, it often manifests as a strong sense of sense of déjà vu from his childhood, like suddenly smelling the scent of his grandmother’s perfume.
“I get this really strong feeling I am about to have a seizure, but now I don’t actually have the seizure and it just disappears on its own,” he said.
“For the first time in years, I am able to spend more time with my kids. I can make plans and know I am not going to suffer a seizure and be out of it for days.
“We can go outside and ride pushbikes together. My seven-year-old daughter, who has grown up watching me get taken away on a stretcher by paramedics, knows for the first time in her life that I will be there to play with her tomorrow.”
The results of second phase of the trial are expected next year.