Jayden Dipper couldn't get access to a neurosurgeon through Newcastle's public hospital system, so he had to raise the money to see a private specialist.
Six months ago, the 22-year-old started having severe headaches, dizziness and blurred vision.
"I had a chest infection with constant coughing and pressure," said Mr Dipper, of Lake Macquarie.
"I'd just started my own landscaping business, but was getting coughing spasms while working. I dropped to the floor for a minute and couldn't see."
He said it felt like "someone was squishing my brain in the back of my head".
"I went to the hospital. They were packed, so I went to the doctors. He thought it was a migraine."
He was advised to take paracetamol and ibuprofen, but they weren't helping the pain.
Two months later, he went to John Hunter Hospital, where he was again diagnosed with a migraine.
"I told the doctor I took my mum's migraine medication and it did nothing," he said.
Five months after his symptoms began, he went to see Dr Leo Valansi at Mount Hutton.
"He said it wasn't a migraine. He booked me in for an MRI. He's an amazing doctor," Mr Dipper said.
He had been telling himself it was nothing bad, but the MRI showed he had Chiari malformation, a structural defect in which the brain extends into the spinal canal.
"In the back of my head, I thought it might be a tumour. So I was a bit relieved it wasn't life-threatening," he said.
He tried to see a neurosurgeon through John Hunter, but couldn't get access.
The waitlist to see a neurosurgeon through the hospital's outpatient clinic is up to five years, with a median time of 1.45 years.
The Newcastle Herald reported in January that 4384 people were on the neurosurgery waitlist at the hospital.
"I've called them a few times, trying to find numbers and emails," Mr Dipper said.
"I finally got a hold of someone and they said they can't do anything until they triage me."
He was told the average wait time for neurosurgery was about 12 months, so he got a referral to a private specialist.
A GoFundMe has been established for Mr Dipper, titled "Public health wait times threaten to leave small business owner without an income for a year".
He said it had been "heartwarming to see how much my friends and family really care for me".
"If I didn't have this support, I don't know what I'd do," he said.
He and his partner recently began renting a house together, and his doctors advised him to stop working as the heavy lifting involved can worsen his condition.
"I've got constant pain now. I wake up with it. In the last few months it's been getting more severe," he said.
He researched his condition and read stories of others who have had surgery.
"It scared me a bit when I found out," he said.
"The cerebellum is swollen and malformed, pushing into the spinal cord and brainstem. They can't cut the brain, so they make more room for it," he said.
"For some people, they cut out the back of your skull. Some get the top of their spine cut off, which is what my surgery might be.
"Some get a curved plate stitched into the back of their skull to replace the skull they take out."
