Suffolk mum's life changed thanks to 'world first' Cambridge brain study
Lydia Griffin was diagnosed with a rare brain condition before surgery
A mother-of-three from Suffolk is telling us how a Cambridge-led brain study - described as a "world-first" by experts - can change even more lives.
Lydia Griffin, 33, from Halesworth had suffered symptoms including severe headaches, nausea and fatigue from childhood up until she had brain surgery in August 2023.
She was later diagnosed with non-hydrocephalic symptomatic pineal cyst syndrome (nhSPC) and had surgery to remove this cyst.
"I would have days where it would be manageable with my medication and then days where it wasn't manageable with the strong medication I was having," Lydia said.
"I can't explain what a difference this has made to not just my quality of life but to my family as well."
Although surgery isn’t usually recommended for these cysts, the research found it can benefit patients even when there’s no fluid build-up.
Lydia - who said she felt dismissed by doctors when she first had symptoms - recalled her vision being affected by the headaches she experienced.
"I was working two jobs, I had three children trying to run a house, my husband was working full-time; the house was so busy, I don't think I'd have carried on like it," she said.
"I was living off incredibly strong painkillers; it was incredibly scary, but the difference between how I was before the surgery and now is like night and day."
Lydia was diagnosed with nhSPC by consultant neurosurgeon, Thomas Santarius, who she said had assessed her condition in previous years before the day-long surgery.
An MRI found Lydia had a benign, pineal cyst and Lydia managed this until 2019, when Lydia experienced an unusual headache.
The CamProS-PC study - between January 2019 and May 2024 - involved 40 patients with nhSPC syndrome, with more than 90% of patients reporting improvements in symptoms and quality of life after surgery.
"This is a poorly understood and currently poorly managed condition and this study is a major step forward in the understanding of the role of surgery," Mr Santarius said.
"However, many uncertainties remain and, as such, this condition is best managed in the context of a controlled clinical study.
"We are therefore planning to develop a randomised controlled trial to bring more clarity to understanding of the symptoms, influence of possible co-existing conditions, and the role of surgery in the management of patients with this condition."