“By that stage I was overheated,I was starting to feel a bit groggy and delusional,as well as still having the migraine from hell,” Martin,58,recalls of his third trip to hospital in March 2018.
Martin spent 22 days in hospital while he received antivirals for encephalitis caused by the herpes simplex virus.Supplied
“What I didn’t realise was that my brain was being filled with a herpes infection and was so swollen it was up against my skull,and there was not much room for it to expand.”
Encephalitis,an inflammation of the brain tissue,is a devastating condition caused by a virus attacking the brain,or through a person’s immune system targeting the brain in error.
If untreated,it can be fatal or cause serious brain damage. But its varied causes and symptoms also make it tricky to diagnose,potentially delaying critical treatment,which has triggered a push for better awareness,training and guidelines for emergency department doctors and nurses in NSW.
Dr Philip Britton,a paediatric infectious diseases physician at the University of Sydney,said it was unsurprising doctors might struggle to diagnose the illness,which manifested differently depending on the cause and the parts of the brain under attack.
“The brain is a complex organ,so it’s understandable when there’s dysfunction that there will be complexity in how that presents.
“But it’s really important that doctors can recognise the syndrome because the result of inflammation of the brain,if it’s not recognised or treated early,is brain damage.”
Encephalitis can cause a change in behaviour,drowsiness,lethargy,fever,headache,seizures,a loss of neurological function such as limb or facial weakness,an inability to speak,or gradual vision loss.
“The altered behaviour or level of consciousness,with a fever or headache,or a fit,that’s the complex that makes you think of encephalitis. It’s the combination we want to make doctors aware of,” Britton said.
Geoff Martin,58,with his wife Therese Martin. He went to hospital three times before he was diagnosed with encephalitis.Supplied
Britton said encephalitis affected people of all ages,although children and the elderly were more vulnerable. were left with long-term neurological problems.
He said encephalitis was not common,but was also “not a rare disease by any stretch of the imagination”. The risk of death ranged from 5 to 20 per cent depending on the patient’s age.
“The risks of dying,or the risk of having brain damage,can be affected by how well you’re diagnosed and treated,” he said.
Martin,of Dulwich Hill,was about to be sent home from the emergency department for the third time when an earlier spinal tap procedure revealed the cold sore virus was attacking his brain. The swelling caused a major haemorrhage – “my brain exploded” – and he spent 22 days in hospital on intravenous antivirals.
A scan shows black spaces,on the left,where the condition eroded brain tissue in Geoff’s frontal lobe.Supplied
Martin sustained a brain injury,suffered months of fatigue,and developed epilepsy. He grows emotional and is overwhelmed more easily now,but considers himself fortunate.
“You can quite clearly see a huge black hole in my brain scans,which is where part of my front lobe used to be. But the brain is an amazing organ,and it rewires.”
Martin’s experience underscores the results of a global survey,by non-profit organisation Encephalitis International,which pointed to barriers to recognising the condition among 614 emergency department staff in countries including Australia,Britain and the United States.
The research in February found 54 per cent of 41 emergency department staff surveyed in NSW did not consider infectious encephalitis,and 83 per cent of staff did not consider autoimmune encephalitis,when presented with a list of accepted symptoms for each condition. More than half,or 56 per cent,did not rank patient death as a possible outcome of delayed recognition and treatment,according to the organisation.
Encephalitis International chief executive,Dr Ava Easton,said the condition’s high mortality rate meant swift diagnosis was critical.
“Not only are you preventing death,but also the disability associated with the condition,such as the brain injuries people often have to live with afterwards that can have life-changing consequences.”
The survey also found only 32 per cent of emergency department doctors and nurses in NSW strongly agreed their medical training gave them the confidence to recognise encephalitis,while 90 per cent of those questioned agreed they would benefit from more training about the condition.
Britton,who was not involved in the survey,said:“The survey tells us that because this is a difficult condition for doctors to recognise,we really need to have understanding of encephalitis embedded into education and training and have really excellent guidelines available to doctors to use.”
