Marsailidh Groat, 30, from Edinburgh, was diagnosed with a Chiari malformation when she was 12 after she started experiencing headaches that were worse when she sneezed
An Edinburgh woman has opened up about her diagnosis with a rare condition that she’s been battling since she was 12-years-old.
Marsailidh Groat, now 30, began suffering from severe headaches in her youth, which intensified whenever she sneezed, coughed, or laughed. A brain scan revealed that Marsailidh had Chiari malformation, leading to an urgent operation at the tender age of 13.
This condition occurs when the brain’s structure is compromised, causing the lower part to push through the base of the skull and into the spinal canal, putting pressure on the brain and forcing it downward.
Mum, 41, who thought severe headache was just a migraine died two weeks later
Marsailidh shared: “I started getting headaches when I was about 12 at the back of my head and I think what sparked alarm bells was that it was worse when I sneezed, coughed or laughed so that was a sign it was all to do with pressure.”
She continued, revealing the gravity of her condition: “I had a brain scan and they found I had the condition and the long term implications can result in paralysis of the upper body but it does take a long time to get to that stage.
“I had surgery when I was 13 and it was successful but it was a really long recovery process for me. When I was off school I struggled with nerve damage, chronic fatigue and muscle weakness as the aftermath of the surgery so it took a long time to build up strength again.”
Once she returned to school, she remembered feeling ‘isolated’ from her classmates due to her prolonged absence. She went on: “The operation was successful but I did suffer some nerve damage as a result and I know my reflexes are slightly less strong on one side.
“I notice it more when I am holding up an instrument for hours a day because it can be quite physically demanding. I have developed coping mechanisms though and I am good at allowing myself to rest when needed. It’s all about championing the NHS really because it totally saved my life and my career and enabled me to go on and do what I do now.”
Rediscovering her passion for music played a pivotal role in her healing process, igniting a deep-seated interest in the connection between creativity and wellbeing. Marsailidh is now one half of a viola and piano duo alongside her musical partner Kathy. The pair met while they were both studying in London and they are planning a performance to support the invaluable work of The Brain Changer Arts Project, reports Edinburgh Live.
Marsailidh concluded: “I went on to study at music college in London and moved back a few years ago and saw the story about The Brain Changer Arts Project and it was a specific story about an eight-year-old girl who had the same condition that I had and it’s really rare.
“She had been helped through an arts programme to engage with physio through dance and craft sessions and I thought it was brilliant and it really resonated with me. I had started playing with Kathy and we thought it would be a great project to do together so we have been trying to spread awareness.”
Marsailidh is on a mission to fundraise fr the charity and the dynamic duo is gearing up for a heartwarming performance that draws on themes of childhood and nostalgia, set to take place at St Vincent’s Chapel in Edinburgh. The show kicks off at 7.30pm on the evening of Saturday, April 5.
Supporters can make a donation here and discover more about this enchanting event here.
