A pioneering study reveals the promise of surgery for treating a common brain cyst that significantly impacts patients’ lives.
In a paper published in eClinicalMedicine, experts at the UK’s Cambridge University Hospital (CUH) NHS Foundation Trust report that, while further research is needed, the study delivered positive results for patients.
Pineal cysts (PCs) are benign, and surgical intervention is rarely necessary unless there is clear enlargement of brain fluid spaces (hydrocephalus), which is usually treated with a surgically implanted valve, known as a shunt, to drain the fluid and reduce pressure.
Historically, it was assumed that all other PCs are asymptomatic.
However, growing medical evidence describes a subset of patients who are symptomatic, despite the absence of obvious hydrocephalus, says the paper.
Known as non-hydrocephalic symptomatic pineal cyst (nhSPC) syndrome, it is characterised by headaches, nausea and vomiting, visual disturbances, gait instability, fatigue and cognitive impairment.
The relatively non-specific nature of the symptoms, their overlap with other conditions and likely coexistence of other conditions and their unclear mechanism, lie at the core of the controversy regarding the very existence of nhSPC syndrome.
The CamProS-PC study, ran between January 2019 and May 2024 and involved 40 CUH Neurosurgical Department patients with nhSPC syndrome.
All surgeries were performed by consultant neurosurgeon, Mr Thomas Santarius, whose aim was to deflate the cyst and remove sufficient amount of the wall of the cyst, balancing the risk of recurrence against the risk of injuring surrounding structures.
He said: ‘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. However, many uncertainties remain and, as such, this condition is best managed in the context of a controlled clinical study.’
Afterwards, more than 90% of patients reported an improvement in symptoms, and there was a significant improvement in global quality of life and Role Functioning (RF) at both three and 12 months in this group of patients.
The results support positive reports from an increasing number of neuroscience centres across the world.
Among the volunteers was mum of three, Lydia Griffin, from Suffolk, who, after a lifetime of agonising headaches and other symptoms she feels were dismissed, describes her treatment as a ‘miracle’.
