Sian Wormald, 12, with her dog Trance. Sian is undergoing treatment for Tolosa Hunt Syndrome.
Sian Wormald, 12, with her dog Trance. Sian is undergoing treatment for Tolosa Hunt Syndrome. Jojo Newby

Rare syndrome enough to bring tears to Sian's eyes

HER troubles became evident when 12-year-old Sian Wormald started to get teary eyes for no apparent reason.

When she would close one eye to wipe the tears away, her vision would become blurred and the colour she used to see as red would change to black.

Given it was late January and the new school term was approaching, Sian's parents Dave and Colleen Wormald thought she might just be anxious about starting high school.

"She was in worlds of pain," Mr Wormald said.

The family would begin a rollercoaster journey to try to find out what was wrong with Sian; and how to make her better.

Little did they know it would be months of visits to doctors, hospitals, optometrists, ophthamologists and neurologists before they would even reach a diagnosis.

"Sian's spent more time lying in an MRI bed than anyone I've ever known," Mr Wormald said.

Eventually, Sian was given the news; she suffers from Tolosa Hunt syndrome.

There is an inflammatory mass behind her eye. It sits just in front of the frontal lobe of the brain and puts pressure on the optic nerve of Sian's right eye.

Tolosa Hunt syndrome is diagnosed by excluding all other possible health issues which cause the same symptoms.

"At one point we were preparing for brain surgery. When the doctors first saw it, it was believed to be a meningioma," Mr Wormald said.

The South Grafton High School Year 7 student is now on steroids to treat the mass behind her eye.

She is on a cocktail of painkillers, steroids and other tablets to offset the side-effects of the steroids. In total, Sian takes about 56 tablets per week.

"Because of where the mass is located, any biopsy or surgery could have taken away some or all of her sight," Mr Wormald said. "The only way to diagnose Tolosa Hunt is to rule out everything else."

The condition is extremely rare. To put it in perspective, there is only one person in the whole of New Zealand who has Tolosa Hunt syndrome.

Another complication of Sian's condition is that treatment severely weakens her immune system.

"She's very susceptible of catching any colds or 'flu's that are around," Mr Wormald said.

Sian will go to Brisbane at the end of this week for another check-up and will learn whether she will have to continue on the course of steroids.