Meet Grace

All eyes were on Grace as she lined up to take the free throw on the basketball court. Pressures were high, team members were holding their breath, and she knew the shot mattered. Just as she went to take the shot, the ball dropped, and Grace went blank. Oh not again.

This was the first time Grace had such a strong feeling of what she explains as deja-vu, a strange sensation she’d been experiencing on and off for years. This time was different though, much stronger and more disruptive, and it wasn’t long before it happened again. Grace was soon in the consulting suite of a neurology specialist.

“We learnt that Grace was having a type of epileptic seizure caused by vascular malformation on her brain. The difference was they weren’t a “movie style” type of seizure that is noticeable, but an invisible kind, where, if you didn’t know what to look for, you’d have no idea it was happening,” explained mum Mary.

And for this sporty and hard working 14-year-old, the condition was life altering. From her initial black out on the basketball court in November 2016, the seizures became much more frequent, lasting longer and effecting her everyday life.

“It was quite scary because it was an invisible illness, so if I was in public, it didn’t look like I was in danger, so no one was going to call for help. I could have up to nine seizures a week, which could last anywhere from three seconds to an hour, so I wasn’t allowed to be on my own, to catch public transport, to go swimming. It was impossible to be independent, I didn’t want to live like that,” said Grace.

Due to the location of Grace’s vascular malformation, surgery was the last option. Over 18 months, Grace worked with the neurology team to trial different medications, yet none of them were slowing down the seizures, and the side effects – ranging from extreme tiredness, impacts on her emotions and rashes – made life very difficult for Grace. That’s when the RCH neurology team, and Dr Joseph Yang’s specialised skillset came into play.

“Planning for Grace’s surgery requires precise information about where the vascular malformation locates, in relation to the nearby brain nerve fibre tracts. Injuring these important nerve fibre tracts during surgery could cause irreparable damage to Grace’s language function, and affecting her vision. So, the goal of her surgery is not only to completely remove the vascular malformation, but to remove it “safely” by preserving the integrity of these nerve fibre tracts” said Dr Yang.

“Standard MRI images do not allow us to “see these nerve fibre tracts”. To do this, we processed Grace’s brain MRI taken before the surgery, using sophisticated imaging modelling techniques to create images mimicking the actual language and vision-related nerve fibre tracts (an imaging technique known as “nerve fibre tractography”). This way, Wirginia and I were able to “see and plan for a safe passage from the brain surface to reach the vascular malformation without interrupting any of these important nerve fibre tracts” said Dr Yang.

“The stakes are high with these types of brain surgeries, where millimetric accuracies are required” said Dr Yang.

“The ability to see these nerve fibre tracts on the MRI images really transformed the way we plan for and perform these type of brain surgeries, allowing us to remove the offending brain lesions with much greater precision”.

“Wirginia was able to successfully remove the entire vascular malformation, stopped her seizures, and in doing so, without causing any new permanent damage to Grace’s language and vision following surgery” said Dr Yang.

“Overall, this is an excellent outcome for such a difficult surgery. It really highlights the benefit of adopting advanced brain imaging research into clinical practice”.

And within a matter of days, Grace was up and moving, and checking that she could still do the splits. The benefits were immediately evident.

“They kicked me out of the hospital pretty quickly, I think the physios got bored of working with me,” Grace cheerily explained. “I was back at school after two and a half weeks, and as I was less tired, and able to concentrate more, I immediately started doing better at school. I’m excited to start VCE knowing that I can do it!” she beamed.

Thanks to the incredible combination of research from Joseph, specialised skillset of neurosurgeon Wirginia Maixner, and the teams at the RCH, Grace is now able to focus on getting her life back, playing as much sport as possible, studying for exams, and hopefully, one day, getting her boat license for adventuring along the Murray River. Despite the years of seizures, and high risk brain surgery, this now confident and bubbly 16 year old doesn’t regret a single thing about her journey.

“I wouldn’t be the person I am today without the seizures. I used to be quiet and shy, but going through it all I never let it get to me, and now I’m much more talkative, and motivated!”

“We can’t thank Joseph and Wirginia and the teams at the RCH enough. We understand the enormous impact of Joseph’s imaging research to assist beneficial outcomes for Grace, and patients like her, and we’re so grateful that Grace was able to receive care here,” said Mary.