Source: Illawarra Mercury
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Nat D’Antonio put up with dizziness and a pounding head for five months before discovering her brain had dropped from her skull, putting pressure on her spinal cord.
The 22-year-old had become a shell of her former self, struggling to work, drive her car or enjoy the simple things in life.
At one point she remembers curling up and falling asleep on the sidelines of her boyfriend’s weekend football match, the pain too much to handle.
‘‘I didn’t have a life. I just wanted to sleep all the time,’’ the Cordeaux Heights woman said.
Her twin sister Jess had to watch helplessly as Nat went on a search for answers.
But Jess would soon have a battle of her own.
Little did she know that, despite having no symptoms, she too had Chiari malformation, a rare neurological disorder that would require life-saving surgery for both women.
‘‘I was the guinea pig,’’ Nat joked.
‘‘When Jess got symptoms I remember thinking, ‘I’d rather go through it again because I could handle it better than her’.’’
Jess isn’t offended.
‘‘We always say it’s lucky Nat got it first, she’s the strong one, I’m the baby,’’ she said.
‘‘If that was me who had to go first I would have been dramatic like, ‘Oh I’m dying’.’’
‘‘That’s why I’d rather go through it again,’’ said Nat, ‘‘I knew how much of a sook you were and I knew you wouldn’t cope with it.’’
For mum Rosemary it was just a double dose of anxiety and stress no mother should have to endure.
‘‘It was really stressful, when Nat got sick everyone was saying give it another month, or ‘I don’t believe it’s that’.
‘‘Everyone thought I was panicking or overreacting and I’m saying, ‘I have this feeling’.’’
Nat woke with a headache ‘‘that just wouldn’t go away’’ in March 2012.
Doctors weren’t convinced she had anything more serious than a bad migraine.
‘‘Nat just laid on the lounge for a week,’’ Mrs D’Antonio said.
‘‘Then after that she had to go back to work but she couldn’t drive for three weeks, she was still so dizzy.’’
The other symptom of Chiari malformation she was exhibiting, but realised only later, was loss of bladder control.
‘‘I was getting up to go to the toilet three or four times in the night, I’d never been like that.’’
Nat’s CT scan showed nothing.
She was told she could ‘‘waste the money on getting an MRI’’ – something her mother was determined to do.
‘‘Mothers know when something is wrong, you do,’’ Mrs D’Antonio said.
‘‘These girls have never been sick in their life, touch wood. They don’t lie about their symptoms but it felt like doctors didn’t believe what she was saying.’’
That’s until world-renowned neurosurgeon Charlie Teo took a look at the MRI results and recommended surgery straight away.
Jess, too, should be tested for Chiari malformation type 1, he said.
‘‘Because we were identical there was a very high chance I’d have it,’’ Jess said.
Dr Teo was right.
He told Mrs D’Antonio not to panic, that she had ‘‘been there and done that’’.
‘‘As soon as she gets symptoms don’t muck around, bring her back and we’ll do it,’’ the doctor assured her.
Nat remembers the diagnosis wasn’t so scary second time around.
‘‘We weren’t that nervous because Jess didn’t have any symptoms and they said heaps of people live with it and never have to get anything done.’’
But just before Christmas Jess had some warning signs.
‘‘It was a lot different. Jess threw us because she got headaches but not all the time like Nat,’’ Mrs D’Antonio said.
‘‘But her neck, a couple of times she couldn’t lift her head, her neck would not support her head, and her legs got muscle aches all the time.’’
Nat and Jess underwent surgery at Prince of Wales Private Hospital within eight months of each other and both made full recoveries.
Nat’s brain had dropped eight millimetres, and Jess had a seven-millimetre slip.
They have matching scars to show for it – tiny and tidy, thanks to the steady hands of Dr Teo, who took pieces of skull out so their brains had ‘‘more room to sit back up’’.
‘‘He took a photo of Nat’s scar in case he had to do the exact same thing again for Jess one day. And he did. He was proud of his work,’’ Ms D’Antonio said.
It took Nat six months post surgery to feel well again and headache free.
Doctors say that’s because she had been so sick for so long.
She’d struggled with the effects of an anti-epileptic drug prescribed prior to her correct diagnosis.
The medication only masked the symptoms of her condition.
‘‘She was on four Topamax tablets a day at one point. I hated it, it just got the better of me,’’ Mrs D’Antonio said.
‘‘All it does is numb the brain and dull the symptoms. When they weaned her off for the surgery she was getting pins and needles so Dr Teo was right, it was hiding the symptoms.’’
Jess, on the other hand, felt better right away.
But the seriousness of her condition became evident in the aftermath.
‘‘I found out after my check-up after six weeks that my brain fluid was actually cut off.
‘‘If I’d left it I could have got meningitis or stroke.’’
Her mum adds: ‘‘Jess was the least sick of the two with symptoms but the sickest.
‘‘Her MRI showed it had totally blocked off the spinal fluid.
‘‘That was really bad, she was lucky she had it when she did.’’
Like most twins, the D’Antonio sisters where there for each other through the bad, and now plan to embrace life and make up for lost time.
Mum though remains a little cautious.
‘‘I still panic a bit, when they play touch football and things…and I worry about childbirth, with the pushing, should they have Caesars, but Dr Teo says they are fine, it shouldn’t have any effect.’’
On her last visit she said to the neurosurgeon: ‘‘Thanks for saving the girls and I hope I never see you again.
‘‘Dr Teo gave me a big kiss and said he hopes he never sees me again either.’’
Nat and Jess consider themselves ‘‘really lucky’’.
‘‘It could have been cancer. I thought it was for a few weeks,’’ Nat said.
‘‘We are just so thankful it was something we could fix, other people have much worse and we are really grateful.’’
Last week Nat got engaged to her partner Jono, who made quite the spectacle on his vacant block of land, covering the soil with fairy lights for his romantic proposal.
‘‘People in the new houses around the block were all watching, he had to explain what he was doing when they saw him putting it all together in the daylight,’’ Nat said.
‘‘It was so romantic.’’
A week earlier Jess said ‘‘yes’’ to her man Ben, whose proposal was much more private – and cheeky.
‘‘Yes they were both engaged within a week of each other, more big bills to pay,’’ Mrs D’Antonio joked.
‘‘We would pay anything for our children’s health, like all parents would, we just have had double at once,’’ she said.
‘‘Now they can get on and enjoy their lives.’