It started with painful headaches that would come on in an instant and disappear just as quickly. Then the dizziness, tingling limbs and fatigue started.
Mother of two children Amber Griffon knew something was wrong, but assumed her symptoms had something to do with low iron levels or not wearing her glasses.
And his 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 an abnormality in her brain – known as a Chiari malformation – a condition she has likely suffered from since birth.
Mum-of-two Amber Griffin has had headaches since she was 17 – she now knows a brain disease is the cause (her partner Levi is also in the photo)
Mother’s headaches ‘feel like twitching’ in back of head and are debilitating
The dysfunction causes a herniation at the base of the brain that puts pressure on the spinal cord, leading to the symptoms. This also puts pressure on Amber’s brain and creates a bulge.
If left untreated, Amber will eventually lose the mobility of her limbs, her ability to care for her children, and her independence.
Speaking to FEMAIL, the young mum from Ballarat, Victoria, said her first symptom – headaches – started when she was 17.
They were unusual in that they were less than 10 minutes long.
As Amber got older, the headaches, which she said felt like twitching in the back of the head, became more regular and more severe.
“Every time I cough, sneeze, scream, laugh or move my head quickly, they come. And they’re horrible,” she said.
The next set of symptoms occurred after Amber gave birth to her daughter at age 24.
“Every time I leaned over to grab it, I felt dizzy, like I was going to pass out,” she said.
Apart from the associated symptoms, the young mother has always been in good health
Now Amber and Levi are trying to find $40,000 for surgery so she can be the best mom to her kids.
“I had previously had problems with my iron levels, so my doctor told me that was probably the cause, but I now know that it is a symptom of my brain problem.”
Her health deteriorated after the birth of her son two and a half years ago.
“The headaches and dizziness got worse. But I also had tingling in my hands and shaking in my hands,” Amber said.
Last November, she was taken to hospital after a severe headache forced her to stay in bed for 15 hours.
“Headaches usually appear as twitching and last 30 seconds to a minute, then slowly disappear after a few minutes.” Then I usually have a lazy day to avoid other things happening,” Amber said.
“But this one was different because it kept going, I couldn’t get out of bed.”
Doctors thought the headache was a side effect of Covid and so carried out scans which led to the discovery of a Chiari malformation.
“They told me I could stay at home or in the hospital and they would look at the ultrasound and let me know the results,” she said.
When the hospital didn’t call, Amber assumed she was out of danger.
“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 in the next day and I didn’t think anything of it because I “I was expecting a bad call from my doctor at the hospital,” she said.
She hung up but then became worried.
The family has had to put their lives on hold since the symptoms worsened.
“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 do some research before going.
“It’s a difficult question because even most 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 uncommon right more,” Amber said.
The public health system will not perform any surgery until Amber reaches the stage where she can no longer lift her arms.
Levi, Amber’s partner, refused to accept this and found a doctor who could operate on her now.
“Professor Stoodley is the head of neurosurgery at Macquarie University Hospital and was amazing, offering to help straight away,” Amber said.
The doctor said he could schedule Amber for life-changing surgery just three weeks after their first consultation.
Although Amber was relieved someone could help her, she admits she also froze. – terrified they won’t be able to pay the $40,000 fee.
Dysfunction means the brain pushes 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 find a solution,” she said.
The couple did not make the first date but thanks to a GoFundMe started by Levi, they were able to schedule surgery for November.
“I was so overwhelmed by the support, I was terrified that I 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 the surgery will reverse all the symptoms and prevent him from developing them again.
“I’m struggling to live my life and be the mother I know I can be to our children, so I’m looking forward to having surgery,” she said.