Chiari Malformation: My ‘glasses headaches’ were actually a warning sign of a brain disease that could leave me paralysed

It started with a painful headache that came on in an instant and disappeared just as quickly. Then the dizziness, tingling limbs and fatigue started.

Mother of two Amber Griffin knew something was wrong, but assumed her symptoms had something to do with low iron or not wearing her glasses.

And her doctors agreed.

But they were all wrong – and it wasn’t until she was admitted to hospital with Covid that the 30-year-old discovered the truth.

Amber’s headaches, tremors and general discomfort were caused by a defect in her brain – known as Chiari malformation – a condition she has probably carried since birth.

The mother’s headache “feels like contractions” at the back of her head and is debilitating

The malfunction causes a hernia at the base of the brain that puts pressure on the spinal cord, leading to the symptoms. It also puts pressure on Amber’s brain and causes bulging.

If Amber is not treated, she will eventually lose the range of motion of her limbs, her ability to care for her children, and her independence.

Speaking to FEMAIL, the young mother from Ballarat, Victoria, said her first symptom – the headaches – started when she was 17.

They were unusual in that they would last less than 10 minutes.

As Amber grew older, the headaches, which she said felt like contractions at the back of her skull, became more regular and severe.

“Every time I cough or sneeze or shout or laugh or move my head quickly, they come. And they are terrible,” she said.

The next set of symptoms came after Amber gave birth to her daughter at the age of 24.

“Every time I bent down to grab her, I felt light-headed, like I was going to pass out,” she said.

Apart from the associated symptoms, the young mother has always been healthy

Now Amber and Levi are trying to raise $40,000 for surgery so she can be the best mother to her children

‘I had problems with iron levels before so my doctor said this was probably the cause, but I now know it is a symptom of my brain condition.’

Her health deteriorated after the birth of her son two and a half years ago.

‘The headache and light-headedness got worse. But I also got tingling in my hands and trembling hands,” Amber said.

Last November she was taken to hospital after a severe headache forced her to stay in bed for 15 hours.

‘The headache usually comes on as contractions and lasts thirty seconds or a minute, slowly disappearing after a few minutes. Then I usually have a lazy day to prevent anything else from happening,” Amber said.

‘But this one was different because he kept going, I couldn’t get out of bed.’

Doctors thought the headaches were a side effect of Covid, so they performed scans that led to the discovery of the Chiari malformation.

“They told me I could stay at home or in hospital, that they would look at the scan and get back to me with the results,” she said.

When the hospital didn’t call, Amber assumed she was safe.

‘My doctor called me two days later and asked me to come in for an appointment as soon as possible. “I said I could come over the next day and thought nothing of it because I expected a bad call from the hospital,” she said.

She hung up, but became worried.

The family has had to put life on hold since symptoms escalated

“I realized I hadn’t asked any questions,” she said.

Her fiancé Levi called the doctors back and they told him about the brain condition so the couple could check it out before going in.

“It’s a tough one because even a lot of the doctors we speak to have never heard of it, but there are thousands of people in Australian support groups so it’s not that rare either,” Amber said.

The public health system will not perform surgery until Amber reaches the stage where she can no longer lift her arms.

Amber’s partner Levi refused to accept this and found a doctor who could now operate.

“Professor Stoodley is the head of neurosurgery at Macquarie University Hospital and it was great, he offered to help immediately,” Amber said.

The doctor said he was able to schedule Amber for the life-changing surgery just three weeks after their initial consultation.

Although Amber was relieved that someone could help, she admits she also felt frozen – terrified that they wouldn’t be able to afford the $40,000 fee.

The malfunction causes the brain to press against the spinal cord, causing major problems

“Levi was so optimistic the whole time that he told me not to worry and that we would figure it out,” she said.

The couple did not find the first date, but thanks to a GoFundMe started by Levi, they were able to schedule surgery in November.

“I’m so overwhelmed by the support, I was terrified that we would have to save, that it would take years and that I would slowly become paralyzed,” Amber said.

The doctor says there is a 90 percent chance that surgery will reverse all symptoms and prevent her from ever developing them again.

“I’m struggling to live my life and be the mother I know I can be for our children, so I’m looking forward to the surgery,” she said.