Plymouth retiree’s dizziness dismissed for years before emergency surgery revealed grade II meningioma

Glenn Lilley, 73, of Plymouth, who had lived with recurring vertigo and hearing problems for years, was diagnosed with a grade II meningioma after collapsing at home in the summer of 2021 and underwent an emergency 11-hour operation to remove the tumour.

Lilley first experienced waves of dizziness, tinnitus and worsening hearing in 2017 and was referred to an ear, nose and throat specialist. She said an MRI at that time did not lead to a diagnosis, she was fitted with hearing aids and told to live with the vertigo. Four years later, while carrying shopping, she collapsed, hit her head on a stone step and was taken to an accident and emergency department by her husband, John.

At hospital Lilley was disoriented and initially suspected to have had a stroke. An urgent MRI showed a tumour arising from the meninges, the membranes that cover the brain and spinal cord. Doctors described the growth as stretching from behind her left eye to the back of her head; Lilley said it looked like "two plums" on the scan. Clinicians told her that, without surgery, the tumour’s aggressiveness might have left her with only months to live.

Meningiomas are among the most frequently diagnosed primary brain tumours in adults and can range from slow-growing, benign lesions to more aggressive atypical tumours. Most meningiomas are classed as grade I and progress slowly; grade II meningiomas, like Lilley’s, are considered atypical, tend to grow more quickly and are more likely to recur. UK figures indicate more than 12,000 primary brain tumours are diagnosed each year, while the United States reports roughly 94,000 such diagnoses annually.

Steroids prescribed to reduce swelling caused Lilley to gain weight rapidly; she said she ballooned from ten stone to almost 13. Doctors later told her that the growth had been visible on her 2017 scan but was missed, and by the time it was detected it had grown to a size that made radiotherapy and chemotherapy unsuitable options. In September 2021 she underwent an 11-hour operation at Derriford Hospital to remove the tumour. The procedure was successful, but clinicians warned of a substantial risk of recurrence and of potential complications from future operations.

Lilley said her surgery was postponed twice because there were no beds available in the intensive care unit. Recovery was protracted: she spent months rebuilding mobility and strength, initially using crutches and later walking unaided. It took about a year to lose the weight gained while taking steroids. Today she continues to experience hearing loss, memory lapses and headaches, and she reports a persistent sensation of facial sagging and frequent wiping of her nose and mouth. She described these ongoing effects as manageable and said she felt fortunate to be alive.

Five-year survival rates for patients with grade II meningiomas are typically reported in the mid-60s to mid-70s, but outcomes depend heavily on how completely surgeons can remove the tumour and on other clinical factors. Medical literature distinguishes meningiomas from more aggressive primary brain cancers such as glioblastoma, which carries a poorer prognosis; fewer than 10 percent of people with glioblastoma survive beyond five years. High-profile cases in recent years have highlighted the disease’s severity: singer Tom Parker died in 2022 after a battle with glioblastoma, and former cabinet minister Tessa Jowell died in 2018 after campaigning for improved brain cancer treatment.

Because symptoms of brain tumours can include headaches, vision changes, seizures, personality alterations, hearing loss and vertigo, they are sometimes mistaken for less serious conditions, which can delay diagnosis. Lilley’s experience of multiple consultations and a missed finding on an earlier MRI underscores both the variability of early symptoms and the challenges of diagnosing brain tumours when signs overlap with more common ear and balance disorders.

Motivated by her experience, Lilley said she plans to take part in Brain Tumour Research’s Walk of Hope in Torpoint in September to raise funds and awareness. Letty Greenfield, community development manager at the charity, called Lilley’s story "truly inspiring," and said her determination highlights the need for greater investment in brain tumour research.

Lilley said she bears no grudge toward the specialist who reviewed her earlier scan and that she was "glad [she] didn’t know about the tumour before, because [she] wouldn’t have wanted to be viewed as poorly." She added that she is grateful for her life and intends to use her experience to help others living with the disease.