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. Robinson chose surgery.

“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. Thankfully, after my first operation I received glasses that allowed me to see clearly again, after severe vision loss to my peripheral vision.”

Relief, however, has repeatedly been followed by setbacks. Robinson received her third shunt in February 2026.

To this, March-Downer described her illness as “a severe case of IIH requiring maximum oral medication plus a brain shunt”. She added that although Robinson’s vision has stabilised, significant symptoms remain, including debilitating headaches that affect her ability to function and work. She also noted that shunts can malfunction or block, allowing pressure to build again.

“There is still no cure for IIH at this point, but the new weight loss medication called GLP-1 receptor agonists have shown significant promise in trials to reduce cerebrospinal fluid pressure and headaches, and can bring these patients into remission,” Dr March-Downer explained.

While Robinson waits for a cure her financial pressure has mounted alongside her ongoing medical demands.

“When I did surgery back in 2021 the shunt cost less than a million dollars. Now it is way over that,” Robinson said.

Treatment overseas exhausted her funds, and she once cancelled further appointments after being quoted US$7,500 for another MRI, and returned to Jamaica. Contributions towards continuing treatment from various good Samaritans have seen her through turbulent times, including from her uncle Judah, who has been steadfast on the journey with her.

Not only has the financial strain been debilitating, but the illness has also narrowed her independence. Tasks that once took less than an hour can consume more than three. Yet she is thankful that she can still work.

“I plan carefully for each workweek, because work is one of my priorities,” she said.

Alicia Robinson (left), who was diagnosed with idiopathic intracranial hypertension (IIH), is joined by members of the Andrews Memorial Hospital Laboratory team in support of IIH Awareness Month, observed in September. From second left are Garrett Williams, Caslyn Campbell, Rianna Prendergast, and Marlene McDermott.

Robinson credits Andrews Memorial Hospital Limited (AMH) with helping her cope in several ways, saying she received most of her care there.

“I have had doctors who, to this very day, rally around me to ensure that I am okay,” she said of the emergency room team. “My medical team is top-tier. At this point the aim was really to save what’s left of my vision and help manage my pain, as chronic illness warriors don’t medicate to get rid of the pain; we medicate to be able to function.”

Maxine Lord, AMH medical records/patient services manager and Robinson’s supervisor, said her commitment remains visible, even through illness.

“Alicia, despite her illness, shows up for work. She is dedicated and committed to her work. She arrives early to complete her tasks on time. It must be that Alicia’s illness becomes unbearable, and she must go to the emergency room, for her to take the time off,” Lord said.

Chad Artwell, the medical records/patient services assistant manager, said: “We continue to stand in support of Alicia in this journey, and we do what we can to ensure she is at her best, despite her condition.”

Robinson admits there are days when she cannot rise, yet she refuses to let IIH define her life.

“I am a fighter,” she said. “I don’t believe in allowing the situation to take me over, so I push through pain.”

Her hope extends to greater awareness and faster specialist care.

“Even if a cure doesn’t come I know that God will heal me,” she said. “I believe that whatever I’m going through is a journey that He decided I had to walk to reach people.”

If you’d like to contribute to Robinson’s medical expenses, her banking details are below:

Name: Alicia Robinson

Branch: Spanish Town

Account number: 000858918

Branch #: 80275

Bank: BNS

Name: Alicia Robinson

Branch: Half-Way Tree

Branch #: 000300771

Account number: 305014990

Bank: NCB