Sleeping difficulties that began last December was the start of a list that grew to include fatigue, nausea, tension headaches, confusion, memory loss, light and noise sensitivity, problems concentrating and with comprehension, neck pain and eventually a feigned stroke.

After an MRI in April revealed a 15 millimetre growth, she was referred to two NSW Hunter Valley neurosurgeons, whose offices told her the condition was "watch and wait" and she'd have to wait months for an appointment.

A friend suggested Ms Harrison, 20, contact controversial Sydney neurosurgeon Dr Charlie Teo, who saw her three weeks later.

She said he explained the seriousness of the growth and how it could block the flow of cerebral spinal fluid, his experience operating in the pineal region, what surgery would involve and cost, and the risk of complications, impairment and death.

"He very clearly said 'Look, you can try to live with this, but the risk that leaving this in would have means you will have no certainty as to whether or not one day you have a stroke or you mysteriously die'," she said. "He gave us both sides of the penny."

Dr Teo removed the tumour nine days later. Ms Harrison has private health insurance and her bill came to $37,000.

"The example I use is I did not know I was walking around with a fish bowl on my head and that's been lifted," she said.

"I did not know how bad I felt until I didn't have it [the tumour] anymore."

She said patients' voices and experiences hadn't been included in the conversation around the NSW Medical Council imposing conditions on Dr Teo's medical registration, following complaints that have been referred to the Health Care Complaints Commission. Dr Teo is already the subject of a HCC investigation.

Concerns have been raised about his professional behaviour and fees, giving false hope and financially-stressed interstate patients.

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Ms Harrison said this did not reflect her experience, saying Dr Teo was a "peaceful presence", had not put pressure on her to proceed and had thoroughly explained the risks.

"I was fully prepared I could die or be permanently impaired, I was fully prepared for that reality, I fully understood it," she said. "I had the opposite of false hope."

Importantly, she said, complaints appeared to have been made by anonymous colleagues, not patients.

"None of it is consequential to surgical outcomes," she said. "I wouldn't care if he wanted to ride a bike while he did my surgery, if he has the skill to do what he's doing, it shouldn't matter."

Ms Harrison knows Dr Teo's following has been called a cult.

"Everyone is quick to put Charlie down when they don't need him, but without him Australia would be lost and many people would have died," she said.

"We're not a cult, we're a community who have had our lives majorly impacted by Charlie and his amazing practice and we love and support him for that."

She is concerned the restrictions - which include Dr Teo receiving written approval from a fellow neurosurgeon before certain operations - will mean some patients with inoperable or "watch and wait" tumours could miss out on potentially life-saving surgery.