Plymouth woman’s dizzy spells were dismissed for years before emergency surgery for grade II meningioma

For years, 73-year-old Glenn Lilley experienced recurring bouts of vertigo, tinnitus and worsening hearing that were repeatedly attributed to benign ear problems. In the summer of 2021, after collapsing at home and becoming disoriented, she was rushed to hospital and given a diagnosis that doctors said could have been life-limiting without prompt surgery: a grade II meningioma stretching from behind her left eye to the back of her head.

Lilley said she initially noticed problems in 2017 and was referred to an ear, nose and throat specialist. An MRI was performed then, she said, but no abnormality was identified. Four years later, while bringing shopping into her house, she collapsed, struck her head and was so confused she could not recall her own name, according to her account. Clinicians at the emergency department first suspected a stroke, but an urgent MRI revealed the tumour.

Surgeons at Derriford Hospital performed an emergency, 11-hour operation in September 2021 to remove the atypical meningioma. Clinicians told Lilley that without surgery the tumour could have left her with only months to live. The operation was successful, but doctors warned the tumour could recur and that further procedures carried risks of serious disability.

Lilley said steroids prescribed to reduce swelling led to rapid weight gain and physical changes that she found distressing. "I had to buy maternity clothes," she said. She described a slow recovery: she first relearned to walk outside with crutches, then without, and it took about a year to lose the steroid-related weight. She said she still lives with hearing loss, memory lapses, headaches and a sense of facial sagging at the end of each day, and that she frequently wipes her nose and mouth to compensate for altered facial sensation.

According to Lilley, clinicians later told her the tumour had been visible on the 2017 MRI but was missed at the time. By the date of detection in 2021 the growth had accelerated, and doctors concluded that chemotherapy and radiotherapy were not viable options. Lilley said her surgery was cancelled twice because there were no intensive care beds available before the operation finally took place.

Meningiomas arise from the meninges, the protective membranes that surround the brain and spinal cord. They are among the most common types of primary brain tumour in adults, accounting for up to a third of diagnoses. Most are slow-growing and classified as grade I; grade II tumours, often described as "atypical," behave more aggressively and are more likely to recur.

Survival statistics vary by tumour type and by how much of the growth surgeons are able to remove. Five-year survival rates for patients with grade II meningiomas typically fall between about 65% and 75%, according to published ranges cited by specialists. By contrast, highly aggressive cancers such as glioblastoma carry far worse prognoses: fewer than one in ten people diagnosed with glioblastoma survive five years or more. Public figures who have died after aggressive brain tumours include singer Tom Parker, who died in 2022, and former Labour cabinet minister Tessa Jowell, who died in 2018.

Symptoms produced by brain tumours depend on their size and location and can include headaches, vision changes, seizures, personality or cognitive changes, hearing loss and vertigo. Because these signs can resemble more common, less serious conditions, delays in diagnosis are not uncommon and can affect treatment options and outcomes.

Now retired from teaching, Lilley said she considers herself fortunate to be alive and has sought to use her experience to help others. She plans to take part in a Brain Tumour Research "Walk of Hope" in Torpoint to raise funds and awareness. Letty Greenfield, community development manager at the charity, described Lilley’s account as "truly inspiring," and said it highlighted the need for greater investment in research into brain tumours.

"I've had a wonderful life and feel very lucky," Lilley said. "I'm grateful just to be alive." She added that she bore no grudge toward the specialist who reviewed her earlier scan and that, in hindsight, she was relieved not to have known about the tumour earlier because "I wouldn't have wanted to be viewed as poorly."