Alicia fights debilitating neurological condition with courage

ON the day Alicia Robinson was to celebrate another year of life, she faced a painful choice: postpone surgery to relieve pressure around her brain or risk losing more of her sight. “For me, it was worth doing because nobody wants to lose their vision at a young age,” she recalled. The 2021 procedure placed a shunt to drain excess cerebrospinal fluid — the first of three shunts and one shunt revision operation to save her vision.

Robinson lives with idiopathic intracranial hypertension (IIH), a condition in which pressure builds around the brain without an identifiable cause. The National Eye Institute (NEI) lists headaches, blind spots and peripheral vision loss among its symptoms. Dr Tameka March-Downer, a consultant neurologist who has treated Robinson, said uncontrolled IIH “can cause permanent loss of vision because the high pressure can damage the optic nerve”.

By 2019 Robinson’s pain was severe, and her sight was fading. Some weeks, she spent several days in the emergency room; at home, darkness became a refuge. “When I have a headache I will spend the majority of my days in bed,” she said.

Unbearable pain could still send her back to emergency care. Vision loss started impacting ordinary encounters but a general practitioner became concerned when she looked in the wrong direction as he spoke to her, and pressed her to complete an Magnetic Resonance Imaging (MRI), which pointed doctors toward IIH. “I was happy because I was now able to put a name to something that I was struggling with for years,” Robinson said.

Specialists found swollen optic nerves, and a lumbar puncture confirmed raised intracranial pressure. March-Downer said: “Diagnosis involves checking for papilloedema, brain imaging to exclude other causes, and lumbar puncture to measure cerebrospinal fluid pressure.” These steps also reflect international IIH consensus guidelines published in the Journal of Neurology, Neurosurgery & Psychiatry. Robinson explained that medication brought difficult side effects and failed to halt her declining vision.

Hence, a lumbar puncture was necessary. “One lumbar puncture recorded pressure above 55 centimetres of water,” disclosed Robinson. “There is no cure, and shunts are placed to save vision or what is left of the vision.