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

• Amber Griffin, 30, has a Chiari Malfunction
• The condition is rare and can causes paralysis  
• READ MORE: I have suffered from debilitating migraines since I was just ten years old – I just want a normal life and for people to take me seriously

It started with painful headaches which would come in an instant and disappear just as quick. Then the dizziness, tingling limbs and fatigue began.

Mum-of-two Amber Griffin knew something was wrong but assumed her symptoms had something to do with low iron levels 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 found out the truth.

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

Mum-of-two Amber Griffin has headaches since she was 17 – now she knows a brain condition is the cause  (partner Levi also pictured) 

The mum’s headaches ‘feel like contractions’ at the back of her head and are debilitating 

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

If left untreated Amber will eventually lose movement in her limbs, her ability to look after her children, and her independence. 

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

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

As Amber got 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 yell or laugh or move my head quickly they come. And they are horrific,’ 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 get her I would feel lightheaded, like I was going to pass out,’ she said.

Apart from the related symptoms the young mum has always been healthy  

Now Amber and Levi are trying to come up with $40,000 for surgery – so she can be the best mum to her kids

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

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

‘The headaches and light headedness got worse. But I also got tingling in my hands and hand tremors,’ Amber said.

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

READ MORE: How a ‘seizure in maths class’ led to my diagnosis of a rare brain condition doctors thought was ‘anxiety’

‘The headaches usually come on like contractions and last 30 seconds or a minute, then slowly wear off after a few minutes. Then I usually have a lazy day to avoid more from happening,’ Amber said.

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

Doctors thought the headache was a side effect of Covid so they did scans which lead to the discovery of Chiari Malformation.

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

When the hospital didn’t ring Amber assumed she was in the clear.

‘My doctor called me two days later and asked me to come in for an appointment as soon as possible, I said I could pop in the next day and didn’t think anything of it because I had been expecting any bad call to come from the hospital,’ she said. 

 She hung up but then became worried.

The family have had to put life on hold since the symptoms escalated 

‘I realised I hadn’t asked any questions,’ she said.

Her fiance Levi called the doctors back and they told him about the brain condition so the couple could research it before heading in.

‘It is a hard one because even a lot of the doctors we speak to have never heard of it, but there are thousands of people in the Australian support groups so it isn’t that rare either,’ Amber said. 

The public health system won’t perform surgery until Amber gets to the stage where she can’t lift her arms.

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

‘Professor Stoodley is the head of Neurosurgery at Macquarie University Hospital and has been amazing, he’s offered to help immediately,’ Amber said.

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

While Amber was relieved someone could help she admits she also froze – terrified they wouldn’t be able to come up with the $40,000 fee.

The malfunction means the brain pushes against the spinal cord – causing major problems 

‘Levi as been so optimistic the whole time, he told me not to worry and that we would work it out,’ she said.

The couple didn’t take the first date but thanks to a GoFundMe started by Levi, they have been able to schedule surgery in November. 

‘I have been so overwhelmed by the support, I was terrified we would have to save up, that it would take years and I would slowly become paralysed,’ Amber said. 

The doctor says there is a 90 per cent chance surgery will reverse all symptoms and stop her from ever developing them again.

‘I am struggling to live my life and be the mum I know I can be to our kids, so I am excited for surgery,’ she said.

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