Odd symptom that led to Aussie teen’s horror diagnosis

An 18-year-old has revealed how she was tested for countless illnesses throughout 2024 until an unusual symptom exposed the devastating truth.

An 18-year-old has revealed how she was tested for countless illnesses throughout 2024 until an unusual symptom exposed the truth.

Sienna Barbara, 18, was experiencing dizzy spells for much of the year and was constantly at doctor appointments. She was checked for low iron and postural hypertension, among other things.

But things took a turn for the worse in December when she experienced a tonic clonic seizure just days before Christmas. This type of seizure can see people lose consciousness, stiffen and jerk.

“That’s when all the chaos started, and it pretty much hasn’t stopped since,” Ms Barbara told news.com.au.

It turned out all of her dizzy spells were in fact absent seizures. Doctors eventually discovered she had a type of glioma brain tumour called IDH1 mutation astrocytoma. It is typically classed as stage one or two, but a small portion of Ms Barbara’s tumour had been classed as a high-grade three.

Sienna Barbara is 18 and has brain cancer. Picture: Supplied

“After the seizure we were in the hospital for so many hours. We got pulled aside by one of these neurosurgeons and told us about the brain tumour I had,” she said.

“My initial response, because I was in so much shock, I laughed a bit. Like he had to be joking. Then I looked around at my family and saw the shock and sadness on their faces.

“It really let it sink it. I have strong role models in my family, and seeing them being stunned and confused and scary made it a lot more real.”

Ms Barbara said she was in hospital for a week after her diagnosis on various medications, coming home with a handful of epilepsy medications. But the seizures weren’t stopping, so she was rushed under the knife to remove the tumour. Most of it was removed in an eight-hour procedure except a small amount to preserve her eye sight. The recovery wasn’t easy, with Ms Barbara recalling she had the most “agonising” pain. She said she “couldn’t look forward” and was crying every day, with new appointments terrifying her. She’s now on a smaller dose of epilepsy medication.

“After consulting multiple specialists, including my neurosurgeon, they recommended a newer targeted therapy as an alternative to radiation and chemotherapy,” she said.

She revealed what symptom tipped doctors off. Picture: Supplied

She had surgery, and is now trying a new medication. Picture: Supplied

This treatment is designed to slow tumour progression, potentially postponing the need for other treatments.

So, after considering all her options — and taking into account her doctor advocating for this treatment — she decided to go down that path. Facing high medical costs, the family has turned to fundraising to support her ongoing treatment.

“It is a lot to take it, it was a hard decision to figure out whether I would take the regular medication and do radiation and chemo or go in for this new drug,” she said.

“But after all the decisions, I think it was the best choice.”

She is still being positive. Picture: Supplied

It’s not the only decision Ms Barbara has had to make that could impact the rest of her life, saying she’s had to make those types of choices every day for the last few months. Most recently, it was her pathway into fertility — a terrifying prospect after countless other medical procedures due to the cancer.

“At such a young age, and as someone who doesn’t really want kids right now, I may change my mind in the future,” she said.

“And having to have that responsibility to do that and make those decisions was really hard. But it’s my body, I control it and my decision matters the most.”

Ms Barbara said the news of the drug, how she was currently feeling and the support of people around her have made her feel more positive about her future.

“I am still happy, I am still going through it and I am still keeping with the optimism,” she said.

To donate to Sienna’s GoFundMe click here

Originally published as Odd symptom that led to Aussie teen’s horror diagnosis