A WOMAN living in Abergele has written a book detailing her struggles with a rare medical condition affecting the brain.

Joanne Robertson was diagnosed in 2018 with Chiari malformation, whereby the lower part of the brain is pushed down into the spinal canal, after years of suffering its symptoms such as extreme headaches and choking on food.

Joanne hopes her book, ‘Chiari and Me - It's Not Just a Headache’, will help shine a light on the condition and cause others suffering from it to be diagnosed quicker than she was.

Initially to be released as an e-book tomorrow (December 3), Joanne hopes paperback copies will also be available before Christmas.

She said: “It started about 10 years ago. I was having all sorts of weird symptoms that were taking me to the doctor. I’d had digestive problems, twinges in my back, sinus issues, and I couldn’t control my temperature, which was just put down to my age.

“I would be having my meals in my bedroom because I was choking so much that I was embarrassed, so my husband didn’t really know the extent of it.

“Then we went on holiday to Lanzarote with family, and they said: ‘You’ve got to go and get this sorted; this isn’t right, you’re choking on everything, even ice cream. As a mum, you just put up with stuff and carry on.

“I was getting another symptom that was even more worrying; I was stopping breathing, especially when I was sleeping, and also a recurrent problem had been a Valsalva headache; if I coughed, laughed, shouted, or moved my head in the wrong place, I’d get this incredible crushing head pain.

“I went to the doctor for that and they said: ‘It’s just a headache; you need to drink less coffee, avoid stress, go to a physio and a chiropractor, all the usual things.”

It was not until 2018, though, that Joanne was eventually diagnosed with Chiari malformation, when she was told by a consultant she was ‘lucky you’re still here’.

She added: “In 2018, everything was getting worse and I was sat on the settee with my husband and I laughed and collapsed.

“I couldn’t move or speak; tears were streaming down my face. So he took me to A&E and saw a doctor who was so keen and precise; she said she wanted to keep me in for more tests.

“It took a couple of days and then a consultant came to see me and I had to go through it all again. She said: ‘You need an MRI, I think I know what it is,’ and sure enough, it was Chiari.

“At the top of your spine, you’ve got a hole that goes into your skull, and through that hole, you’ve got all your nerves that control everything.

“That’s why there are hundreds of symptoms, because it depends which nerves are being compressed. My brain had dropped through that hole and was stuck to my spinal cord.”

There is no cure for Chiari malformation, but Joanne, who has underwent two operations since her diagnosis in March 2018, explained that surgery can help ‘pause’ its symptoms.

Her book also includes diaries from her husband, Andrew, who she essentially now considers her ‘full-time carer’, which she believes will chime with those close to other people with Chiari malformation.

Another motivation for her writing the book was the lack of online information about the condition; she hopes, then, that writing in such detail will make it more easily identifiable in the future.

Joanne added: “There’s no cure for it, but when they do the surgery, it aims to pause your symptoms at that point so they don’t get any worse.

“I know that there are a few people in North Wales that have got it, and they’ve all had similar tales to me; that it took them so long to get diagnosed. It’s just to raise awareness.

“It’s clear that there’s not that much information on the Internet. I wanted a no-nonsense book that described my symptoms, so hopefully someone would read it, think: ‘I’ve got that, I think I should ask for a scan.’

“It takes it from my husband’s point of view, as well. There are some diaries of his, so I’m hoping that will resonate with partners and families of people who have got Chiari malformation. It affects the whole family.

“Andrew’s basically my full-time carer now, but he still has to go to work. I’ve had to give up work – I was a really active person, and it just changes you.

“I don’t want other people going through years of suffering, because the sooner you can get diagnosed and have surgery if you need it, the quicker it will pause your symptoms.

“I left it too long; the consultant made that clear. I just really hope it does some good.”

‘Chiari and Me - It's Not Just a Headache’ will available from December 3 at: www.amazon.co.uk/Chiari-Me-Its-Just-Headache-ebook/dp/B09MMNTCQR.