Rare tumour left Queensland nurse unable to walk, talk or smile

A young nurse says her biggest dream is being able to smile again after a devastating health battle turned her world upside down.

Staring back at her reflection in the mirror, Tori Dent says she has found it difficult to get used to her new face.

Having always regarded her “big and beautiful” smile as her best feature, she said that being unable to express herself in that way has been a very difficult adjustment.

The 28-year-old’s life has been a rollercoaster after she was diagnosed with a “rare and inoperable” brain stem tumour in March 2020.

Tori Dent has gone through extensive therapies on her journey to regaining some normality into her life. Photo / Instagram

The devastating condition has completely altered Tori’s life, impacting her ability to walk, talk and smile.

But the brave woman is simply grateful to still be alive, and is fighting for recovery with the hope of one day being able to smile again.

“My smile was my favourite feature and a huge part of my identity,” Tori, a Brisbane registered nurse, told news.com.au.

“I got braces when I was 19, which I think gave me a great smile. It is pretty upsetting to have lost that.

“I try not to let it affect my life and stop me from living. I’ve always been a confident person, but it definitely plays on my mind.

“To not be able to smile can make me feel insecure, and even ugly. To smile again is a massive goal of mine.”

Tori's smile was her favourite feature. She says to smile again is a massive goal. Photo / Instagram

Tori first dismissed her symptoms as the result of sea sickness, as she had just come off a cruise.

She felt incredibly dizzy, but after this sensation did not improve, she went to see a doctor who diagnosed her with vertigo and gave her medication to help ease her condition.

However, the dizziness did not go away, and Tori was taken to the emergency ward at her local hospital to undergo blood tests and a CT scan.

With all the results clear, doctors decided to perform an MRI to get a better picture at what was going on inside Tori’s body.

The shocking results were the last thing she ever expected.

“I was alone in my hospital room when the doctor came in and broke the news,” she recalled.

“I had an inoperable brain stem tumour. This was shocking to hear.”

The slow growing benign tumour is located on Tori's brain stem. Photo / Instagram

“The neurosurgeons told me it was a slow growing, benign tumour on my brain stem. In a strange way, I felt somewhat relieved there was a reason for my symptoms.

“But I was kind of in denial, and the whole thing really confused me. It didn’t really sink in at first.”

Tori was diagnosed with a hemangioblastoma – a very rare type of mass that accounts for approximately 2 per cent of brain tumours.

Common symptoms of this condition include vertigo, nausea, vomiting, headaches and weakness of the arm muscles.

Although doctors initially believed the tumour was inoperable, they decided to take a gamble, and just over a week later Tori underwent brain surgery.

Around 80 per cent of the mass was removed during the procedure.

Doctors took a gamble and operated on the tumour. But it rapidly grew back, leaving Tori unable to walk, talk or swallow. Photo / Instagram

However, within a month, it rapidly grew back bigger than before – now sitting at 5.2 centimetres on her brain stem.

The new growth wreaked havoc on Tori’s body, leaving her unable to walk, talk, swallow or smile – and she was placed in the ICU for just over two weeks until her condition stabilised.

She underwent 14 months of intense rehabilitation, where she learnt how to walk and talk again, however not at the same level as she could prior to the tumour.

The nurse has since undergone eight more surgeries to help her injuries, and has regular physio, speech and occupation therapy to give her the best chance at recovery.

But her biggest dream is to be able to smile again.

Tori had facial reanimation surgery in October 2021 to help make this happen, however she still had a long way to go.

Tori is sharing her story to raise awareness of her condition. Photo / Instagram

She says she has noticed how differently she is treated by strangers now compared to before, but does not let it get her down.

“People are quite curious about how I look,” she said.

“I suppose it is natural. But some are really condescending, and talk to me like a child.

“I’ll also get stared at in public.”

Throughout this experience, Tori says she has learnt a lot about herself and has realised she is more resilient than she ever thought possible.

She is sharing her story to help raise awareness of her condition and to help others going through similar health hardships feel less alone.

“I’m stronger than I thought I was, and more patient than ever before,” she added.

“I’ve grown up a lot after this experience. Life can be flipped upside down quicker than you think.

“I’ll never take anything for granted again.”