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Four years ago Peter suffered his first seizure while hiking, with no memory of the event. Peter’s epilepsy escalated until he was involved in a work accident, driving a boat into a pontoon with no recollection of the event afterwards.
When first reviewed by Mater’s Advanced Epilepsy Service, Peter said that his epilepsy had destroyed everything – sapping him of energy and taking his independence.
Mater Clinical Nurse Consultant in Epilepsy Peter Jones says that he remembers Peter clearly, as one of the first cases at Mater’s Advanced Epilepsy Unit.
“I can remember him because I noticed he was just staring down at his feet. Dr Sasha Dionisiso always asks the question: ‘if there was something we could do to cure this, what would it mean to you?’ That was the one point when the patient looked up and said ‘It would give me my life back. I have nothing.’”
A video electroencephalography (EEG) was scheduled for July 2015 to allow neurophysiologists to analyse the seizures from a monitoring room in real time.
Mater Epileptologist Dr Sasha Dionisio said Peter was identified as a good candidate for Mater’s Stereotactic EEG (SEEG) procedure. Mater is one of only two hospitals in Australia who offer the SEEG procedure.
“Stereotactic EEG is an advanced monitoring and diagnostic procedure that involves mapping of the brain and localisation of areas of potential epileptic activity,” Dr Dionisio said.
“In the operating theatre, neurosurgeon Dr Jason Papacostas, with the assistance and guidance of the neurologist, implants deep brain electrodes through strategically drilled holes in the skull. The electrodes have many contacts that record very small areas of brain tissue for activity, allowing up to 256 channels of activity to be monitored, in comparison to the twenty channels recorded through video EEG.”
Based on the two week evaluation, Peter was referred to neurosurgery where the decision was made to undergo a left anterior temporal lobectomy on 17 November 2015. Peter recovered well, with a short inpatient stay working with Mater’s speech therapists and occupational therapists to develop and strengthen Peter’s memory.
Six months after his initial presentation, Peter once again walked into Mater’s Centre for Neurosciences, but this time he knew he had his life back―seizure-free.
Peter, a foster parent to five young children with a grown family of his own, now enjoys fixing things around the house, having recently renovated the bathroom and repaired the fence. During his outpatient review his wife reported that she didn’t know what to do with her husband and all of his energy.
Peter Jones said they weren’t expecting Peter Upton would be seizure free at that point.
“You want and you wish the best for everyone but I did not think in May he’d be telling me about running and fixing things and renovating his bathroom.”
Peter will continue to be monitored by Mater’s Advanced Epilepsy Service for the next two years, with the aim of discharging him from the service free of all epilepsy medication.
“It feels so rewarding to see a lovely, charming man and his family experience such a change and positive outcome,” Dr Dionisio said.
Peter Jones said he wanted epilepsy sufferers to know that a diagnosis of refractory epilepsy, epilepsy that has failed two or more medications, was not necessarily a sentence of epilepsy for the rest of your life.
“We can help thirty per cent of patients who are unresponsive to medication. This isn’t necessarily a service that will work for everybody but this is a pathway for a number of people who assume there is no pathway at all,” said Peter.
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