Aaron’s Craniopharyngioma Story

Aaron’s Craniopharyngioma Story: 14 Brain Surgeries and the Strength to Keep Going

From childhood headaches to 14 brain surgeries, two courses of radiotherapy and life-changing complications, Aaron O’Keeffe shares what it means to live with a recurring craniopharyngioma.

For almost three decades, Aaron O’Keeffe from Dublin, Ireland, has lived with a rare brain tumour that refuses to leave him alone.

Diagnosed with a craniopharyngioma in November 1991, Aaron has undergone 14 brain surgeries, two courses of radiotherapy and numerous hospital admissions. His treatment has included the removal of his pituitary gland, the insertion of Ommaya reservoirs, and further operations following serious infections.

Although his tumour is classified as non-cancerous, the impact on his health and everyday life has been anything but straightforward.

When Aaron shared his experiences with Aunty M Brain Tumours in June 2020, he spoke openly about the challenges of repeated brain surgery, the complications he has faced and the support that has helped him through it all.

Above everything else, Aaron believes the hardest part of surviving a brain tumour is sometimes simply finding the strength to keep going.

Two Years of Headaches Before His Brain Tumour Diagnosis

Aaron’s story began in 1989, when he started experiencing increasingly frequent headaches.

Because his mother had a long history of migraines, doctors initially believed his headaches were hereditary. He was prescribed painkillers and sent home.

For approximately two years, the headaches continued without any clear explanation.

In November 1991, one of Aaron’s school friends suggested that his family seek another medical opinion.

The second doctor also considered migraines a possibility but decided to arrange a CT scan to rule out anything more serious.

That decision changed Aaron’s life.

The scan revealed a brain tumour close to his pituitary gland.

The 20p Coin Aaron Will Never Forget

Aaron remembers very little about the medical conversations that followed his CT scan on 12 November 1991.

However, one small childhood memory has stayed with him.

While waiting at the hospital with his younger sister Naomi, the two spotted a 20p coin underneath a vending machine.

After managing to retrieve it, they were delighted with their discovery and excited about spending their unexpected fortune on chocolate and sweets.

When they turned around to share their excitement with their parents, the adults were speaking to a doctor.

While Aaron and Naomi had been celebrating their 20p discovery, their parents had been told that Aaron had a brain tumour.

It is a striking memory of how differently children and adults can experience the same moment.

Aaron still marks 12 November in his phone calendar as his personal Craniopharyngioma Day.

When Blurred Vision Led to His First Brain Surgery

After the diagnosis, Aaron’s parents were advised to watch for changes in his vision or other symptoms that could indicate the tumour was causing further problems.

Craniopharyngiomas commonly develop near the pituitary gland and optic nerves. As they grow, they can place pressure on the structures responsible for vision.

For Aaron, eyesight became an important warning sign throughout his life.

The family made it through Christmas 1991, but on 27 December, while watching television, Aaron realised he could no longer clearly read the answers on a quiz show.

His parents immediately contacted the hospital.

The following day, Aaron was admitted for brain surgery.

He spent approximately three weeks in hospital over the New Year and into January.

Although the operation went well, the tumour’s location meant the surgeons could not safely remove all the tumour tissue.

His family were warned that further growth was possible.

Aaron recovered from his first operation and soon returned to school.

He even proudly showed visitors the 27 metal staples that had been removed from his healed surgical wound.

For a while, life began to return to normal.

Unfortunately, it would not be his last brain operation.

When the Craniopharyngioma Started Growing Again

Around 18 months later, in June 1993, a routine MRI scan revealed that Aaron’s tumour had started growing again.

He underwent a second brain surgery in July.

Once again, removing all the tumour was difficult because of its location close to important brain structures.

During this operation, the surgical team decided to remove Aaron’s pituitary gland completely.

The pituitary gland produces hormones that control several important bodily functions, including growth, metabolism and responses to stress.

Its removal meant Aaron would need ongoing hormone replacement medication and specialist monitoring.

Despite another major operation, the tumour continued to cause problems.

Further Brain Surgery in December 1995

In December 1995, another MRI scan revealed more tumour growth.

Aaron returned to hospital for his third brain surgery.

Surgeons initially reopened the scar on the right side of his head. However, the amount of scar tissue from previous operations made it difficult to remove enough of the tumour.

When Aaron woke up on the children’s ward on Monday evening, he was told he would need to return to the operating theatre on Wednesday.

This time, surgeons approached the tumour from the opposite side of his head.

The new incision stretched from the middle of his forehead towards his left ear.

Aaron was discharged home in time for Christmas, with radiotherapy planned for the following year.

Six Weeks of Radiotherapy While Still at School

In February 1996, Aaron began his first course of radiotherapy.

He was in his third year of secondary school and faced 30 sessions over six weeks.

Every weekday, he followed an unusual routine.

He would leave home and attend school as normal before leaving around lunchtime to travel into Dublin city centre.

There, he would meet his mum, and together they would take a bus to another hospital for his treatment.

Before radiotherapy began, the medical team created a plaster mould of Aaron’s head.

They used it to make a transparent plastic mask that fitted over his face and head, keeping him still during each treatment session.

When he completed radiotherapy, Aaron was allowed to keep both the mask and the plaster mould.

The mask spent years in the attic, while the plaster mould was painted and displayed on a shelf in his bedroom.

It is one of those unusual reminders of treatment that many brain tumour patients will recognise.

For a number of years afterwards, Aaron’s scans showed that the remaining tumour was responding well to treatment.

MRI scans and visual field tests continued regularly, gradually becoming less frequent.

But in 2001, doctors discovered further growth.

Delaying Surgery for a Friend’s Birthday

Fortunately, the tumour was growing relatively slowly following radiotherapy.

This meant Aaron had some flexibility over when he would undergo another operation.

One of his close friends was celebrating a 21st birthday, and Aaron was delighted to postpone surgery until after the celebrations.

It might seem like a small thing, but for someone whose life had repeatedly been interrupted by hospital appointments and operations, being able to make that decision mattered.

Why Aaron Needed So Many Brain Surgeries

Over the years, Aaron’s craniopharyngioma repeatedly grew back.

Because of its position near delicate parts of the brain, removing all the tumour without causing additional damage was extremely difficult.

Each operation also created more scar tissue, making subsequent procedures increasingly complicated.

By the time Aaron had undergone several surgeries, doctors were considering different ways to manage the tumour while reducing the need for further major operations.

For Aaron, keeping track of every admission became increasingly difficult.

He explained that his memory had gradually deteriorated, leaving him struggling to separate one operation from another.

Hospital visits, dates and individual procedures often became mixed together.

This was another lasting effect of living with a recurring brain tumour.

The Ommaya Reservoir: An Alternative to Repeated Surgery

During one of Aaron’s later operations, surgeons inserted an Ommaya reservoir.

This is a small device placed beneath the skin and connected by a tube to a fluid-filled area.

In Aaron’s case, it was intended to allow doctors to drain fluid from the cystic part of his craniopharyngioma without repeatedly opening his skull.

The hope was that, if the reservoir remained correctly positioned and the tumour grew in a suitable way, the medical team could remove some of the fluid using a needle.

Unfortunately, the first reservoir did not work as hoped.

After Aaron became unwell with vomiting, doctors attempted to drain the tumour but could not remove a significant amount of fluid.

They suspected the tube had become blocked.

Aaron needed another operation, during which surgeons inserted a second Ommaya reservoir with a smaller access point near the top of his skull.

This second device was used on several occasions to drain fluid.

Aaron described the experience as unusual rather than particularly painful.

Apart from the initial needle insertion, he compared the feeling to having a small balloon slowly deflate inside his head.

Although unpleasant, the sensation generally passed.

The reservoir provided another option for managing the tumour, but it could not prevent every future operation.

Brain Surgery Through the Nose and a Serious CSF Leak

As Aaron underwent more operations, the scar tissue from previous craniotomies made conventional surgery increasingly challenging.

His neurosurgeon suggested an alternative approach called transsphenoidal surgery.

Rather than opening his skull through an existing scar, the surgeons could reach the tumour through his nose.

Initially, the procedure appeared successful.

Aaron’s recovery was much quicker than after his previous craniotomies.

However, he subsequently developed a cerebrospinal fluid leak, commonly called a CSF leak.

Cerebrospinal fluid surrounds and protects the brain and spinal cord. A leak through the nose can create a serious risk of infection.

Aaron returned to hospital, where doctors attempted to repair the leak.

They also inserted a lumbar drain into his lower back to help reduce pressure and give the repair time to heal.

For days at a time, Aaron had to remain lying flat, sitting up only briefly for meals.

The medical team periodically checked whether the leak had stopped.

Unfortunately, it continued.

Almost a month passed, and another operation was being arranged.

Then, shortly before the planned surgery, the leak finally stopped.

Aaron’s hospital stay lasted almost six weeks, making it his longest single admission.

Developing an MRSA Infection After Brain Surgery

Another serious complication arose following a later operation.

After returning home, Aaron noticed fluid leaking from his surgical wound.

He also experienced severe headaches and swelling around his head.

When he returned to hospital, doctors discovered an MRSA infection.

MRSA is a type of bacteria resistant to several commonly used antibiotics. It can cause serious infections, particularly following surgery.

Aaron needed another operation to remove infected material.

During the procedure, surgeons decided not to replace the original bone flap, the section of skull that had been removed during surgery.

They were concerned that infection could remain on the bone.

The plan was to replace it later with a specially manufactured synthetic implant.

For Aaron, complications like this demonstrated that living with a craniopharyngioma was not only about dealing with the tumour itself.

Sometimes the consequences of treatment created entirely new challenges.

A Second Course of Radiotherapy

When Aaron received his first radiotherapy treatment in 1996, he had been told that he would not be able to have it again.

However, advances in radiotherapy techniques meant that his medical team later considered a second course appropriate.

They hoped that further radiotherapy could help control the tumour without requiring more surgery.

This time, treatment was much closer to home because his local hospital had opened its own oncology centre.

Aaron completed 25 sessions over five weeks.

Once again, he needed a specially fitted mask, although the newer version was made from a plastic mesh material.

After treatment, Aaron was allowed to keep it.

He later had it spray-painted, framed and mounted above the stairs in his home.

It became another unusual reminder of everything he had experienced.

When MRSA Returned and Another Operation Became Necessary

Unfortunately, Aaron’s difficulties with infection were not over.

In late May of the following year, he noticed a small red mark on his left temple.

Initially, it resembled a spot, but gradually grew larger and developed into a soft, fluid-filled swelling.

Sometimes the fluid leaked down the side of his face or onto his pillow.

Aaron contacted his neurosurgeon and sent photographs through WhatsApp.

He was told to attend the hospital’s emergency department immediately.

The surgeon removed the swelling, which Aaron referred to as the bubble, and sent samples for testing.

Aaron was prescribed a prolonged course of antibiotics.

However, the swelling returned after treatment ended.

Doctors suspected that the infection was persisting on the plastic tube from his first Ommaya reservoir, which was still inside his head.

Removing the tube carried risks, but leaving it in place could allow the infection to continue.

Aaron faced his 14th brain surgery.

Thankfully, the neurosurgeon successfully removed the remaining tube.

Scans and laboratory findings suggested that the infected material had been removed or cleaned out.

For a short time, things appeared to be moving in the right direction.

Then Aaron experienced another frightening complication.

A Seizure After His 14th Brain Surgery

Two days after the operation, Aaron’s mum sent him a text message.

He did not reply.

His dad also tried contacting him, but there was still no response.

This was unusual because Aaron normally kept his phone close by.

Concerned, his mum telephoned the hospital and asked staff to check on him.

She then left work and travelled to see him herself.

When she arrived, Aaron was sitting on his bed with the windows open. He complained of feeling nauseous and warm.

A nurse who knew Aaron and his family came into the room.

When she asked him a question, he stared at her without answering.

His mum tried speaking to him, but again there was no response.

Aaron then began breathing unusually, making exaggerated hand movements and repeatedly saying no.

His mum feared he was having a stroke.

The medical team arrived and began assessing him.

When a nurse held up a pen and asked Aaron to identify it, he could not answer.

He was sedated, intubated and taken for further scans.

Fortunately, doctors established that Aaron had not suffered a stroke.

He had experienced a seizure.

Aaron was transferred to neurosurgical intensive care for closer monitoring before eventually returning to a hospital room.

He remained in hospital for another three weeks before being discharged.

After 14 brain surgeries, repeated infections and years of treatment, it was yet another difficult experience for Aaron and his family.

Living With Brain Tumour Fatigue and Memory Problems

By June 2020, Aaron described fatigue as one of his biggest continuing challenges.

He had also noticed changes to his memory over the years.

Although he could often manage everyday activities, there were times when his brain seemed to reach its limit without warning.

He described it as though someone had suddenly flicked a switch.

His ability to process information would disappear, and he would need to stop what he was doing and find somewhere quieter.

Brain tumour-related fatigue can be difficult for other people to understand.

Someone may look physically well yet experience overwhelming tiredness, difficulty concentrating or problems processing conversations and information.

For Aaron, these invisible difficulties were another reminder that recovery did not simply end when he left hospital.

The Hardest Part of Surviving a Brain Tumour

When Aaron was asked what he believed to be the toughest challenge of surviving a brain tumour, his response was straightforward.

“For me, it is to keep going.”

After an operation or course of treatment, people often hope to return to their previous lives.

But recovery can involve relearning how to manage everyday activities, rebuilding physical strength and adjusting to changes that may never completely disappear.

For Aaron, this process had happened repeatedly.

Just as he began recovering from one operation, another complication or episode of tumour growth could send him back to hospital.

His tumour had shaped much of his life, sometimes in ways he could not fully identify.

Nevertheless, he remained determined to continue.

Aaron recognised that his experiences had taken a great deal from him, but he also tried to appreciate what he still had.

His approach was to keep moving forward, even when circumstances were difficult.

That did not mean everything was easy or that he always felt positive.

It meant finding a way to carry on despite everything that had happened.

The Importance of Family, Friends and Support

Throughout his experiences, Aaron has relied heavily on his family and close friends.

They have supported him through childhood diagnosis, repeated surgeries, radiotherapy, infections, seizures and the exhausting process of recovery.

For Aaron, knowing he had people around him made a significant difference.

He also spoke particularly warmly about the nurses who cared for him.

Having spent so many years attending hospitals, Aaron had developed longstanding relationships with members of the medical teams.

Some nurses had known him since his earliest admissions to the children’s ward.

He joked that they sometimes remembered his medical history better than he did himself.

Their experience, kindness and ability to explain complicated medical information had been invaluable.

Aaron’s Advice for Others Facing a Brain Tumour Diagnosis

After almost three decades of living with a craniopharyngioma, Aaron had several suggestions for anyone facing a brain tumour diagnosis.

1. Don’t Feel You Have to Face Everything Alone

Aaron encouraged patients and families to seek support from people who understand what they are going through.

Brain tumour support groups and charities can provide information, encouragement and opportunities to connect with others who have faced similar experiences.

This can be particularly valuable for people diagnosed with rare tumours such as craniopharyngioma.

2. Be Careful With Online Searches

Aaron also warned about relying too heavily on internet searches immediately after receiving a diagnosis.

Medical information online can be frightening, particularly when search results focus on severe complications or worst-case scenarios.

He encouraged people to seek reliable information and speak with their own medical teams rather than assuming that another person’s experience would be the same as theirs.

3. Make the Most of Your Nurses and Medical Team

One of Aaron’s strongest pieces of advice was to speak to the nurses involved in your care.

Following a difficult consultation, patients may struggle to remember everything a doctor has said.

Nurses can often help explain information, answer practical questions and provide reassurance.

Aaron felt that good nurses were invaluable, especially during the most difficult moments.

4. Keep Going, Even When Recovery Is Difficult

Above all, Aaron encouraged others to keep looking forward.

He understood that remaining positive is not always straightforward and that some days can be much harder than others.

But he believed that finding small reasons to continue, accepting support and recognising personal achievements could make difficult periods more manageable.

What Is a Craniopharyngioma?

A craniopharyngioma is a rare brain tumour that develops near the pituitary gland and hypothalamus, deep within the brain.

Although it is usually non-cancerous, its location can make it challenging to treat.

As a craniopharyngioma grows, it may press against nearby structures responsible for vision, hormone production and other important bodily functions.

Common Symptoms of Craniopharyngioma

Symptoms vary depending on the tumour’s size, location and the individual’s circumstances.

They may include:

• Persistent or recurring headaches
• Blurred vision or loss of peripheral vision
• Changes in growth or development, particularly in children
• Hormone deficiencies
• Fatigue and reduced energy
• Changes in appetite, weight or sleep
• Memory or concentration difficulties

For Aaron, headaches were the earliest warning sign, followed by changes in his eyesight.

Throughout his treatment, visual field testing also helped doctors monitor possible tumour growth.

Why Can Craniopharyngioma Come Back After Surgery?

One of the major challenges with craniopharyngioma is its proximity to important brain structures.

Surgeons may be unable to remove the whole tumour safely without risking damage to surrounding tissues.

If tumour tissue remains, it may grow again, although recurrence is not inevitable.

This is why some patients need long-term MRI monitoring and additional treatment.

Depending on individual circumstances, treatment may involve surgery, radiotherapy, drainage of fluid-filled cysts or a combination of approaches.

Patients may also require lifelong hormone replacement if the pituitary gland has been damaged or removed.

Aaron’s experiences highlight just how complex treatment can become when a craniopharyngioma repeatedly returns.

Beyond 14 Brain Surgeries: Aaron’s Story of Living With a Craniopharyngioma

Aaron’s story is difficult to imagine unless you have experienced something similar.

Fourteen brain surgeries, two courses of radiotherapy, infections, seizures and years of medical appointments have affected nearly every part of his life.

But what stands out is not simply the number of operations.

It is the ordinary moments that sit alongside them.

A little boy discovering 20p with his sister while his parents received life-changing news.

A teenager leaving school at lunchtime to attend radiotherapy appointments.

A young man delaying brain surgery so he could celebrate a friend’s birthday.

And an adult who continues to appreciate the family, friends and nurses who have supported him through decades of uncertainty.

Aaron’s experiences demonstrate why a non-cancerous brain tumour should never be dismissed as something minor.

The tumour may not be cancer, but the effects of its location, treatment and complications can be profound.

For Aaron, surviving has meant repeatedly adapting to circumstances he could never have anticipated.

His determination to continue, despite everything he has experienced, is an important part of his story.

And perhaps his greatest message to others facing a brain tumour diagnosis is that you do not have to find your way through it alone.

Thank you to Aaron O’Keeffe for sharing his experiences with Aunty M Brain Tumours and helping raise awareness of craniopharyngioma and the long-term challenges of living with a recurring brain tumour.

This story reflects Aaron’s experiences as shared in June 2020. His medical circumstances may have changed since the original publication.

Read More Craniopharyngioma Stories

Aaron’s experience is one of many different journeys following a craniopharyngioma diagnosis.

You can find more personal stories from people affected by this rare brain tumour in our Craniopharyngioma Stories collection.

Although each person’s experiences will be different, hearing from others who understand can provide valuable insight into diagnosis, treatment, recovery and life afterwards.

Where to Go After a Craniopharyngioma Diagnosis

If you or someone you care about has been diagnosed with a craniopharyngioma, there are organisations that provide reliable information, emotional support and practical guidance.

Brain Tumour Ireland

www.braintumourireland.com

Provides awareness, information and support for people affected by brain tumours in Ireland.

The Brain Tumour Charity

www.thebraintumourcharity.org

Offers information about diagnosis, treatment and recovery, as well as support services for people affected by brain tumours and their families.

The Pituitary Foundation

www.pituitary.org.uk

Provides information and support for people affected by pituitary conditions, including hormone deficiencies and the long-term effects of craniopharyngioma treatment.

Brainstrust

www.brainstrust.org.uk

Offers personalised support to people living with brain tumours, helping them navigate treatment, recovery and the challenges of everyday life.

Your Specialist Medical Team

People affected by craniopharyngioma may require ongoing care from neurosurgeons, endocrinologists, ophthalmologists and other specialists. Your medical team can advise on appropriate monitoring, treatment and hormone replacement.

Medical disclaimer: This article shares Aaron’s personal experiences and provides general information for awareness and peer support. It is not intended to replace individual medical advice, diagnosis or treatment from a qualified healthcare professional.