Researchers at Cambridge BRC have highlighted the potential value of surgery to treat a particular type of brain cyst in the first study of its kind. Initial findings from the CamProS-PC study, published in eClinicalMedicine, showed that patients affected by pineal cysts experienced positive results following surgical intervention, though further research is needed. 

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.

Mr Thomas Santarius, consultant neurosurgeon at Cambridge University Hospitals performed all surgeries for the CamProS-PC study which ran between January 2019 and May 2024 and involved 40 patients with nhSPC syndrome from the CUH Neurosurgical Department.

The aim of the surgery 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.

Over 90 per cent of patients reported improvement of symptoms afterwards and there was significant improvement in global quality of life and Role Functioning (RF) at three months, and 12 months in this group of patients. The results support positive reports from an increasing number of neuroscience centres across the world.

The paper says:

The CamProS-PC study is the first prospective cohort study to rigorously investigate the efficacy and safety of surgical management of patients with severe nhSPC syndrome. It demonstrated significant benefits to health-related quality of life and symptomatic burden

It provides evidence to justify a randomised placebo-controlled trial of safety and efficacy of PC resection compared to conservative management in patients with severe symptoms.

Mr Santarius 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.

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.

Supporters of the study include patients, CUH staff, the Cambridge Clinical Trial Unit, the NIHR Global Health Research Group for Acquired Brain and Spine Injury, the NIHR Cambridge Biomedical Research Centre, the Royal College of Surgeons of England and the Wellcome Trust (ISSF Fund).