“Why did he give false hope?” Why everyone’s talking about neurosurgeon Dr Charlie Teo.

A joint investigation by 60 Minutes, The Sydney Morning Herald, and The Age has raised concerns about Australia's most celebrated brain surgeon, Dr Charlie Teo, and the "medical miracles" some of his patients say he offered them.

On Sunday night, 60 Minutes ran a segment claiming that while Teo's successes have been lauded by the media for years, his failures have "troubled many doctors and nurses who've been left to treat patients and their families left financially and emotionally crippled from his futile surgeries."

The program, hosted by The Sydney Morning Herald's chief investigative reporter Kate McClymont, spoke with a number of Teo's former patients and their families.

One of them was Michelle Smith. When a then 19-year-old Michelle showed up for the first appointment with her mother, she claims Teo told them they had come to the best and that removing the tumour would be easy.

"He was a doctor that had his feet up on the desk, had a yellow snake [lolly] hanging out of his mouth, had a motorcycle helmet right behind him so it was visible," Michelle's mum, Anna, recalled.

"He was arrogant, he was cool. He said, 'You're not gonna get better than me'."

In 2003, Teo removed the tumour that was causing Michelle to have continuous epileptic seizures. Anna drained her savings and borrowed money from family to pay the cost of operation, which was $50,000. In Michelle's follow-up appointment, the doctor told her he had removed some of the tumour, but not all, and that another surgery would be required.

"'Everything’s great. You can stop all your meds'," Michelle recalled him saying.

While Teo deemed the surgery a success, as the years passed Michelle's seizures continued. She says she could not drive or hold down a job. In 2014, she had a seizure behind the wheel of her car, and hit two parked cars. After the accident, she had more scans done, and alleges that Teo had operated on the wrong side of her brain. 

In 2016, she had another operation to remove the tumour. It was conducted by a neurosurgeon at a public hospital, at no cost to Michelle. Since then, the seizures have stopped.

Four years ago, she sued Teo for medical negligence and obtained a confidential settlement. Teo denied he had operated on the wrong side of her brain.

"The scans don’t lie," Michelle said. "It’s all there. Maybe he needs to look at them again."

Another patient of Teo's was four-year-old Mikolaj Barman, who lived with his parents Prasanta and Sangeeta in Assam, India. Mikolaj was diagnosed with an incurable and inoperable brain tumour called diffuse intrinsic pontine glioma (DIPG), one of the most devastating and lethal childhood cancers in the world. There is no cure and the average life expectancy is six to 18 months.

"It is the only tumour in paediatrics where, from the day you’re diagnosed, you’re already considered palliative. It’s not a question of if you are going to die, it’s really when you’re going to die," leading US paediatric oncologist Mark Kieran said.

Professor Mark Souweidane, one of America's leading paediatric neurosurgeons who has spent 20 years studying DIPGs, told 60 Minutes that surgery is not an option for this fatal form of brain tumour.

After hearing about Teo's surgical prowess, Mikolaj's father Prasanta contacted the doctor and was delighted when his office responded positively in an email. "Dr Teo has reviewed the scans and suggested urgent surgery, he said there is a very high likelihood of cure if he does the surgery before radiation," 60 Minutes reports the email read.

"If all goes as planned, the surgery should be curative as we should be able to remove the entire thing. This means that prognosis would be excellent... He should hopefully live a long and happy life."

Prasanta was informed that Mikolaj's operation would cost $150,000 if performed at Prince of Wales Private Hospital in Sydney or $80,000 if performed in Singapore. Either way, Teo would have to be paid $40,000 before the surgery commenced. The family opted to have the surgery in Singapore.

Prasanta sent another email to Teo asking him to look at the MRIs again because he was told by two Indian neurosurgeons that there was no treatment for his son's tumour.

"Our diagnosis and recommendation remains the same and we think we can cure Mikolaj with surgery," Teo's office confirmed.

A GoFundMe page was set up to help pay for the cost of the surgery. In addition, Prasanta drained both his savings and retirement fund and asked for his family's help. Mikolaj's school and friends also donated.

Watch: Dr Teo defends the high cost of his procedures. Story continues below.

The night before his operation in October 2018, Prasanta told his son, "There will be a big fight tomorrow, there’s something inside your brain, something inside your head, so that bad things will be taken out, and after that you’ll be OK again."

Mikolaj said he was prepared for battle and punched the balloons in his hospital room. "I will fight like this," the little boy said, grinning.

Half an hour before the operation, Teo told Prasanta and Sangeeta that the tumour had spread, and suggested he may not be able to remove all of it. They were alarmed to be told this for the first time at the last minute, but carried on with the surgery as it seemed too late to back out.

Ten hours later, Dr Teo told them he had removed 85 per cent of the tumour, which appeared to be benign. But pathology results done after the operation revealed the tumour had the "H3K27M mutation", which is the defining marker for DIPG. According to The Age, if Teo "doubted the two previous diagnoses of a DIPG, he could have done a biopsy to be certain."

The Barmans never saw the doctor again. Mikolaj was left paralysed and would never walk, talk, or eat on his own again.

His parents spent $40,000 to take him back to India and into intensive care. He could only communicate by blinking. Ten months later, the tumour returned and Mikolaj died.

"There should be some regulation for this. If not, it's a scam. There was no hope. For a DIPG, there is no hope," Prasanta told 60 Minutes tearfully. He and Sangeeta are wracked with guilt over the last months of their only son's life and what they put him through.

"So why did he give the false hope in the first place?"

The Barman family. Image: SMH.

The 60 Minutes segment also raised questions about the high price of Teo's operations. In a statement to Mamamia, the doctor's office wrote: "Dr Teo’s charging practices as a neurosurgeon are in line with those of other professionals in the field. As you can appreciate, not all brain surgeries are equal, and the amount charged is based on a range of factors.

"While some surgeries are relatively quick and safe, other surgeries can take hours or involve particularly difficult work. It is generally accepted practice for a surgeon not to charge the same fees for a simple 45-minute surgery as for a complicated 18 hour tumour resection. The bulk of the costs are the hospital fees, with the remainder of the costs being split between a variety of health professionals including the surgeon, anaesthetist, pathologist, radiologist, radiographer etc.

"Using one example of a complex case, the total cost of the medical procedure was about $120,000, and in that situation around $80,000 goes to the private hospital for its fees, while the remaining $40,000 is shared between the various health professionals.

"Some patients, particularly those without private health insurance, choose to crowdfund to cover costs of various services, including private hospital costs, travel, overseas experimental procedures and disability care and services. Australian health insurance does not cover medical expenses incurred overseas, so sadly this is out-of-pocket expenses for patients.

"The discussion around costs and care is symptomatic of Australia's health systems. The difference between public and private, state-by-state regulations around hospital admissions and the cost of medicine are complex topics worthy of debate."

Teo also addressed costs in a lengthy interview with Tracy Grimshaw for A Current Affair on Tuesday night, telling her he is not in it for the money.

"For some outsiders not sitting in the room with you having a discussion with the patient, it's so wrong for them to judge you on what’s going on in the room. If someone is trying to portray me as some money-hungry bastard that was operating and hurting children based on money, that’s what I want to correct. It’s not that case," he told Grimshaw.

When asked why he is not in the public health system (where costs are cheaper), Teo said, "So, I'm going to say something, Tracy, that I might regret but here we go. If your attitude is that you want to treat every patient like your own family member, then you want everything going for you.

"You want the surgeon to be confident, in peak physical condition, in a good mood, you want the nursing staff to be trained and on the ball, you want the anaesthetist to be the best, you want the instruments and equipment to be the best; that's what you want. Especially if you're going to be doing brain stem surgery or brain surgery.

"If you can't get that, I think it's irresponsible to operate on that patient. So here's the problem with the public health system, I've worked in the public health system for many, many years. They refuse to give me my own team. They refuse to give me neuro-dedicated nurses. I was forced to operate with nurses who had never done neuro-surgery before.

"One of them bumped my hand once; she was an orthopedic nurse, she was lovely, she was good at what she does - orthopedics. But when she did neuro-surgery with me, she bumped my hand, it hurt the patient and I swore I would never again work in a system that doesn't encourage excellence.

"When I operate in the private, I've got a team of nurse I've built around me over the last 20 years... You have a nurse who bumps you while you're doing neuro-surgery, what happens? You damage the internal capsule, or you damage an artery. What does that do? It makes them paralysed. What does that do? You may as well cut off their arm.

"And does it get better? It doesn't get better. There is no reparative process in the brain. It's unforgiving. So you can't cut corners. And you can't accept second best."

Cost was not a factor for the family of 79-year-old Erny Djie. According to The SMH, Erny's five daughters would have paid Teo "whatever he asked because of the quality of life he assured them their mother would have afterwards.

"Instead, we paid him for her indescribable pain and suffering," daughter Meiry said.

In August 2017, Erny was told she had an inoperable brain tumour. Meiry and her sister Claudia, who live in Australia, flew their mother into the country to meet with Dr Teo for a second opinion. They claim that in the consultation, Teo told them they had done the "right thing in coming to see him" and that his "risk to benefit ratio" was far better than other surgeons. He told them Erny possibly had only weeks to live and that he was the best there was.

Having come from an overnight flight from Singapore to Sydney, Erny, who couldn't speak English, was understandably exhausted. Meiry said she nevertheless kept smiling and tried to "communicate her concerns".

"She either has surgery tomorrow or she accepts death. Talk to her outside," Meiry claims Teo said. She later told the Health Care Complaints Commission (HCCC) about the conversation with the doctor.

The family was in shock. They had not expected to be making such a serious decision on life or death surgery so soon. But, after being reassured they were in good hands, they went ahead. The operation cost $100,000, with $40,000 for Teo.

After the surgery, the doctor told them it was a success and that he had removed 95 per cent of the tumour. But Erny was paralysed on one side of her body and couldn't eat or drink, nor communicate well. They paid another $15,000 for post-op complications and rehab.

Erny's daughters flew with her back to Jakarta. She died in November 2017.

"My mother lived the last 94 days of her life in a state of complete misery," Meiry said. She and her sisters were, like other families of Teo's patients, wracked with guilt over what they had put their mother through. "I believe he vastly downplayed the risks of the operation." 

Teo denied this, as well as pressuring Erny and her family into making a hasty decision to go ahead with the surgery. 

The HCCC found that the complaint "did suggest problems with Teo’s obtaining informed consent for surgery."

That is no comfort to Erny's family, who are angry that all the HCCC did was write to Teo to remind him of his ethical obligation to provide patients with all the information possible so they can make the best decision about their healthcare.

60 Minutes, The SMH and The Age have also covered the stories of former patients Rebecca Anderson, Bella Howard, and Joe Leslie.

Listen to Mamamia's daily news podcast, The Quicky. Story continues below.

Yet for all the unsuccessful surgeries, there have of course been successful ones. Since the 60 Minutes segment aired, numerous patients have spoken in defence of Dr Teo. Such as 24-year-old Monica Lopresti, who says that the doctor saved her life.

According to news.com.au, Monica began losing her memory last year even though she was in great health. An MRI revealed she was suffering a benign cystic tumour on her brain. Seven neurosurgeons refused to operate to remove the tumour, deeming it too unsafe.

Teo took her on as a patient, explaining the serious risks involved, including death. Monica decided to proceed with the operation, which was done in Spain, and within four days of the surgery, she was back on her feet.

"I’m one of four children and losing me just wasn’t an option to my family and we were still getting over the passing of my dad, who also died from brain cancer in 2014," Monica said.

"[Dr Teo is] a world-renowned surgeon but he just listened to me. There was no judgment and he was just so humble and treated me like his own family. Despite the fact I could have driven 25 minutes to have the surgery in Sydney, we had to travel 23 hours and I would do it all again."

The mother of Teo's "miracle girl" Milli Lucas criticised 60 Minutes, saying she was "absolutely disgusted" with the segment.

"These people went to him as a last resort and he tried his best now want to have a go?" she wrote in a Facebook post.

In 2019, the doctor removed 98 per cent of Milli's brain tumour, which other surgeons had said was inoperable. Milli's mother, Monica Smirk, credits Teo with giving Milli precious extra years with her family. Milli died in January last year. 

"Dr Teo is an amazing surgeon who gives all some real hope. I bet if people got brain cancer there would be only one doctor they would want to do the operation," Monica said.

"Nothing was ever going to save Milli. We all knew that but he gave us an extra few years – she wouldn’t have had that and we wouldn’t have had that without him."

In his A Current Affair interview, Teo said that all his surgeries affect him, the good and the bad, contrary to how some perceive him as "heartless".

"There is a French vascular surgeon who wrote a book on the philosophy of surgery, and I don’t think you can put in any better words when he said 'every surgeon carries with himself a small cemetery'. My cemetery is not small, it’s a significant sized cemetery. I have pictures of my patients on my phone to remind me every day I’ve got to do it better, how I’ve got to find an operation that’s more perfect. How I’ve got to find a cure for cancer," he said.

"So when someone accuses me of having a disregard of life, a disregard of quality for life and treating my patients as if they’re some sort of bank where I can get money out of them... that I find abhorrent and disgusting and that is what I want to correct. It hurts me."

The doctor is currently facing a disciplinary hearing over two operations, which he acknowledges had terrible outcomes. Teo has not been able to operate in Australia since last year, after strict conditions were placed on him following "concerns from colleagues" that he was a risk to the public.

"I desperately want to work in Australia as a neurosurgeon doing what I do best to extend or the save lives of my patients," Teo told Mamamia.

"I am willing to work in any public or private hospital in Sydney or any suitable hospital in Australia doing neurosurgery. If any hospital offers me clinical operating privileges, and I get my supervisor approved, I could and would absolutely be back operating in Australia tomorrow."

Feature Image: Instagram.