Prospective study into controversial brain cyst syndrome is world first

In a paper just published in eClinicalMedicine (opens in a new tab) experts at Cambridge University Hospital (CUH) NHS Foundation Trust say while more research is needed, it delivered positive results for patients.

Among the volunteers was mother 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” (see Lydia’s story below).

Pineal cysts (PCs) are non-cancerous and surgical intervention is rarely needed unless there is obvious enlargement of brain fluid spaces - called hydrocephalus – which is typically managed with a surgically implanted valve – called a shunt - to drain it away and reduce pressure.

Historically it was assumed that all other PCs are asymptomatic, but 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.

Full article: CUH news