WHEN pressure begins to build in Ben Valery's brain, the hydrocephalus sufferer has only 36 hours to see a surgeon or he could die.
Living in Gladstone, Ben's treatment has meant countless emergency flights with the Royal Flying Doctor Service.
His latest struggle began on January 19 when he presented to Gladstone Hospital with severe headaches, nausea and tiredness.
Ben was disappointed with how they handled his treatment because he was not flown out until the next day.
"I started to deteriorate a lot more, to the point where I had to get up to the hospital and try and get to Brisbane as soon as possible… but the Gladstone Hospital more or less didn't believe me," he said.
"We got mucked around for hours, we got sent for a CT scan, which shouldn't have happened because it showed nothing, it showed no pressure."
Ben's mum Kelleen Windsor is frustrated and angry with the system and said having new doctors all the time interfered with how fast her son was transported.
"They should never hesitate when Ben is presented with symptoms. Being 18 years old and having it all his life, you'd think we would know when something is not right," she said.
Central Queensland Hospital and Health Service chief executive Len Richards said clinical judgements were made in each case depending on the results of tests.
"If patients require special attention we ensure they get it, and if that needs to happen in another location we do our utmost to support where we can," he said.
The family has considered moving to Brisbane to be closer to specialists but don't want to leave family and friends.
Despite undergoing 38 brain surgeries, Ben tries to live his life as normally as possible.
He was born with hydrocephalus, a potentially life-threatening condition caused when cerebro-spinal fluid cannot drain properly and causes swelling and pressure in the brain.
Despite the misconception that hydrocephalus is a rare condition, it affects more people than spina bifida, brain tumours or Down Syndrome.
The severity of the condition can vary, with some people having very few problems.
We're just looking at trying to find the best option so I don't have to live like I am all the time.
However for Ben, he struggles with painful headaches 24 hours a day.
"As far as living with, and trying to deal with it, I just try and go along day by day," he said. "It does tend to get hard at times, when I do get a lot worse and can't really do anything."
Ben recently graduated from Gladstone State High School and has been offered a management traineeship with Supa IGA.
"I try and live a somewhat normal life, but I am limited to what I can do in a lot of ways," he said.
After recent surgeries in Brisbane, Ben and his mum Kelleen Windsor decided to see another neurosurgeon in Sydney who can hopefully offer different ways to manage his condition.
"We're just looking at trying to find the best option so I don't have to live like I am all the time."
- Before the development of shunts, hydrocephalus was a death sentence
- Effects can range from seizures, learning difficulties and painful headaches