"Pain from little-known brain condition left me feeling like my head was being ripped off"

14.02.22

A former health board employee who suffered years of debilitating pain has explained how a sharp-eyed Ysbyty Glan Clwyd doctor diagnosed a little-known brain condition.

Joanne Robertson, from Abergele, suffered for a decade with increasingly excruciating head pains, memory problems, blurred vision, bowel problems and balance issues before being diagnosed with Chiari malformation.

Whilst waiting for one of two major brain operations to arrest the brain condition the mum of two decided to record her experiences about the little known disorder in a book called Chiari and Me – It’s Not Just a Headache.

The former hospital switchboard supervisor’s aim was to help those suffering with the complaint – and their families - and “give people hope we can live with the condition”.

She owes her diagnosis and subsequent treatment to consultant Dr Sanghamitra Chakrabarti, who recognised Joanne’s variety of symptoms and ordered a brain scan to confirm the disorder.

Joanne, 50, said: “I am lucky to be here. In the book I thank Dr Chakrabati for getting me to a scan. I’d suffered problems for more than 10 years and the incidents were becoming more and more frequent. I was diagnosed with IBS, but since my operation I’ve not had it.

“I was told I had migraines. I couldn’t control my temperature and it was put down to the menopause. I was told to go to physio and to avoid stress. Over the years I was sent everywhere and I was just getting a series of individual diagnoses.”

Joanne eventually began to stop breathing at intervals and, after collapsing one day, was rushed to YGC’s emergency department (ED).

She underwent an upper endoscopy to see whether she had throat cancer and a lumber puncture, to check for meningitis, but doctors were still stumped as to the cause of her symptoms.

It was only when Dr Chakrabarti sent Joanne for the scan, because she’d seen Chiara malformation before, she was diagnosed.

“Even getting to this stage was big because when you have a Chiari pain in your brain it’s like having your head ripped off,” she said. “So for her to say ‘this is not normal’ and take it seriously was massive for me.

“It wasn’t until Dr Chakrabati put the pieces together I got the diagnosis.”

Having never heard of Chiari malformation before her diagnosis she set about researching it online – but she found little information and what was there scared her.

She said: “I thought ‘there needs to be information out there, this is worth telling people’.

“I wanted to tell it from my husband Andrew’s side as well because it affects the whole family. Everyone who has Chiari has family concerns and worries.”

Joanne with her husband Andrew

Chiari malformation occurs when the brain stem pushes down into the space where the spinal column is and occurs in around one in 1,000 people.

As in Joanne’s case it can cause the brain’s tonsils to descend. They are part of the cerebellum, which lies at the base of the amygdala - part of the brain which controls a number of important basic, emotional and memory functions.

Surgeons remove a piece of skull to relieve pressure, with the aim of increasing the flow of fluid around the brain and allowing it to move upwards away from the spinal column.

Joanne’s excruciating head pains were caused by the pressure it caused.

During her first operation at The Walton Centre, in June 2018, she had part of the base of her skull removed and her brain tonsils separated from her spinal cord - but it soon became apparent the pressure was still there.

In September 2018 consultants made the decision to take away more of her skull, cauterise part of her brain and insert a metal plate.

Despite her gratitude to those who treated her Joanne still has many issues to deal with day to day – but she’s still here and determined to help others deal with the condition.

She revealed: “I remember feeling really selfish and wondering if I should have the second operation because of what it would put my family through – I could have left my children.

“I was able to sit on the sofa and talk to Andrew for about half an hour a day at this point but three different consultants told me I needed it – or the condition would get worse and I would die.

“They told me the recovery would be hard and I had a bad couple of days but I was back home on the fifth day. In the book I’ve detailed how much it impacts on the family.”

Joanne Robertson, who struggled for a decade before being diagnosed with Chiari malformation

Joanne said Chiari changed her whole life. She added: “I can’t work, I can’t concentrate on things.

“My balance is shocking and my vision is still affected, but the head pains and breathing problems have subsided.

“I’ve got less feeling in my right leg and my right arm, so it’s about living with the condition rather than being completely cured.

“The surgery stopped the decline in my health in its tracks. It’s not a cure, it just stops the symptoms – but I’m proof there is hope for those with this condition.”

For more information around Chiari malformation visit: Chiari malformation - NHS (www.nhs.uk)

Joanne’s Book, Chiari and Me – It’s Not Just a Headache, is available through Kindle ebooks and via Amazon in paperback