Paris’s Craniopharyngioma and Cushing’s Disease Story

Paris’s Craniopharyngioma Story: Brain Surgery, Cushing’s Disease and Rebuilding His Life

After years of unexplained symptoms, Paris Dancy discovered he had a brain tumour near his pituitary gland. What followed was brain surgery, Gamma Knife radiosurgery, hormone complications and an emotional journey that changed how he viewed his life.

For Paris Dancy, the first signs that something was wrong were easy to explain away.

He had a demanding job as an investigator, a busy life and plenty of reasons to feel tired or stressed. But when persistent headaches, unexplained weight gain and exhaustion began affecting his everyday life, he struggled to understand what was happening to his body.

Despite exercising regularly with his wife, Paris continued gaining weight. His health deteriorated, and eventually an MRI scan revealed a tumour growing close to his pituitary gland.

Paris was diagnosed with a craniopharyngioma, a rare brain tumour that develops near structures responsible for regulating hormones, vision and other essential bodily functions.

His treatment included brain surgery and Gamma Knife radiosurgery. However, the physical and emotional consequences extended far beyond the treatment itself.

Paris also faced serious hormone-related problems, including a reported diagnosis of Cushing’s disease, significant weight gain, depression and anxiety.

When he joined me on the Aunty M Brain Tumours Talk Show, Paris spoke openly about his experiences and what it took to rebuild his confidence, relationships and sense of identity.

His story is about more than surviving a brain tumour. It is about learning to live with a body and a life that have changed in ways you never expected.

Listen to Paris tell his story in full in the Aunty M Brain Tumours Talk Show interview below, or keep reading for the written version.

The First Signs Something Was Wrong

Looking back, Paris believes his symptoms began in 2013.

At the time, he worked as an investigator and initially attributed his tiredness and headaches to the pressures of his job.

But as the months passed, his symptoms became increasingly difficult to ignore.

He began gaining weight, despite regularly exercising with his wife. His lower back became stiff, his energy levels dropped and the headaches continued.

Paris was accustomed to being physically active, which made the changes particularly frustrating.

His wife, who worked in healthcare, also noticed something unusual about his appearance.

His eyes appeared to be bulging.

It was another indication that something might be happening beyond ordinary stress or tiredness.

When His Health Continued to Deteriorate

Paris sought medical advice and was initially diagnosed with low testosterone.

He was prescribed steroid treatment, but his health did not improve.

Instead, he continued experiencing significant physical changes.

Eventually, his symptoms became so severe that he developed fluid around his heart and struggled to breathe.

Further investigations were needed.

An MRI scan finally revealed a tumour growing near his pituitary gland.

For Paris, receiving the diagnosis brought a mixture of emotions.

After spending so long feeling unwell without understanding why, there was relief at finally having an explanation.

But that relief quickly turned to uncertainty.

“I was relieved… but then I thought, what is this?”

He now knew something serious was happening inside his head, but he had little idea what the diagnosis would mean for his future.

Being Diagnosed With a Craniopharyngioma

Paris’s brain tumour was located close to his optic nerves.

The optic nerves carry visual information from the eyes to the brain, and pressure on these structures can cause serious eyesight problems.

His neurosurgeon explained that the tumour needed to be treated urgently.

Because of its location and the risk to his vision, surgery was recommended.

For someone who had originally thought he was dealing with work-related stress and exhaustion, the prospect of brain surgery was a frightening change in circumstances.

Brain Surgery Through the Nose

Paris underwent a procedure known as transsphenoidal surgery.

Rather than performing a traditional craniotomy, where surgeons remove a section of the skull to access the brain, this approach allows the surgical team to reach certain tumours in the pituitary region through the nose.

It can be used to treat selected tumours near the base of the brain.

During the operation, surgeons discovered that Paris’s tumour was larger than they had anticipated.

They removed as much as they safely could, but some tumour tissue remained.

The medical team recommended further treatment using Gamma Knife radiosurgery.

For Paris, this meant that although the initial operation was over, his brain tumour treatment had not finished.

Having Gamma Knife Radiosurgery After Brain Surgery

Approximately a month after surgery, Paris underwent Gamma Knife treatment.

Despite its name, Gamma Knife does not involve a surgical knife or an incision.

It is a form of stereotactic radiosurgery that delivers highly focused radiation to a targeted area.

For Paris, hearing that he needed radiation treatment was initially frightening.

However, the experience was less daunting than he had imagined.

The procedure was carried out as an outpatient, meaning he did not need to remain in hospital overnight.

A specially fitted head frame was used to keep his head in the correct position during treatment.

Although the actual procedure was manageable, the frame caused some discomfort afterwards.

Paris remembered the headache following treatment as the worst part.

It was another stage in an already difficult medical journey, but he was relieved that the experience had not been as frightening as he originally feared.

Living With Cushing’s Disease and Hormone Problems

One of the most complicated aspects of Paris’s experience was understanding the hormone-related problems affecting his body.

The pituitary gland plays an important role in regulating hormone production.

Because his tumour was located in this region, and because of the treatments and medication involved, understanding the cause of his symptoms was not always straightforward.

Paris also reported being diagnosed with Cushing’s disease.

He struggled to establish which of his physical changes were related to the tumour, his hormone condition or the medication he had received.

For him, this uncertainty was particularly frustrating.

He wanted answers, but the effects of pituitary conditions can be complicated and may require ongoing specialist investigations and treatment.

Paris also felt that there was insufficient public understanding of Cushing’s disease and its impact on people’s lives.

“I think there’s a lack of awareness and education when it comes to it.”

Significant Weight Gain and Changes to His Body

Before his health problems, Paris described himself as an athletic man weighing approximately 230 pounds (104 kg).

As his health deteriorated and he experienced significant hormonal changes, his weight increased to almost 400 pounds (181 kg).

This was far more than an issue of appearance.

The changes affected his mobility, confidence, relationships and the way he saw himself.

He had once been physically active and comfortable in his body. Now he was trying to understand how that body had changed so dramatically.

For people living with hormone disorders, weight changes can be particularly difficult because they are not always explained by diet or exercise alone.

Paris’s experience highlights why comments about weight can be especially hurtful when someone is managing a medical condition that other people cannot see.

Depression, Anxiety and the Emotional Effects of a Brain Tumour

Although Paris had survived brain surgery and undergone further treatment, he still faced significant challenges.

The emotional impact of his diagnosis became an important part of his recovery.

He experienced depression and anxiety while trying to understand everything that had happened.

Like many people who have been diagnosed with a brain tumour, Paris worried about what the future might hold.

Would the tumour return? Would his health improve? Would he ever feel like himself again?

There was also the difficult process of coming to terms with changes to his physical appearance, abilities and everyday life.

For Paris, recovery was not simply about healing from an operation.

He had to reconsider his identity and what he wanted his life to look like.

Learning to Accept That Life Had Changed

Before his diagnosis, Paris had a clear sense of who he was.

He had his career, physical fitness, relationships and the routines that shaped his everyday life.

After treatment, many of those things felt different.

At first, it was difficult to accept that he could not simply return to the life he had known.

Over time, however, Paris began approaching recovery differently.

Instead of focusing entirely on becoming the person he had been before his diagnosis, he started thinking about who he wanted to become.

“I had to rebuild my entire life. My foundation, my belief system… everything changed.”

This became an important turning point for him.

He recognised that his experiences had changed him, but he did not want those changes to prevent him from finding purpose and happiness.

Finding Strength Through His Christian Faith

Throughout our conversation, Paris spoke openly about the importance of his Christian faith.

His beliefs had always been part of his life, but his brain tumour diagnosis challenged him in ways he had never anticipated.

There were moments when he felt angry, confused and uncertain about why he had experienced so much.

He questioned his circumstances and struggled to understand how his life could have changed so dramatically.

But over time, prayer and his relationship with God became important sources of comfort.

Paris explained that his faith helped him find peace with circumstances he could not always control.

It did not remove the physical difficulties or make every day easy.

Instead, it helped him develop a different perspective on his experiences and find reasons to keep moving forward.

Everyone finds strength in different places during illness and recovery.

For some people, it comes from family or friends. Others find comfort through counselling, support groups, hobbies or personal beliefs.

For Paris, his faith became central to how he rebuilt his life.

How His Wife Supported Him Through His Brain Tumour Journey

Another important part of Paris’s story is the support he received from his wife.

She was there when his symptoms first began and recognised changes in his health that needed further investigation.

She also supported him through his diagnosis, treatment and the emotional difficulties that followed.

During our conversation, Paris became emotional when discussing everything his wife had experienced alongside him.

He recognised that while he was the person undergoing treatment, she had also carried considerable worry and responsibility.

Brain tumours affect entire families.

Partners, parents, children and friends often find themselves taking on unfamiliar responsibilities while coping with their own fears about the future.

Paris felt strongly that carers and loved ones do not always receive the recognition they deserve.

He wanted people to understand how important their support can be, particularly during the most difficult stages of illness and recovery.

Finding a New Purpose After His Craniopharyngioma Diagnosis

One of the most encouraging parts of Paris’s story is how he began using his experiences to help other people.

His background included work in mental health, social services and coaching.

After everything he had experienced, he became increasingly interested in supporting people who were trying to rebuild their lives after significant challenges.

He recognised that illness can change far more than someone’s physical health.

It can affect confidence, relationships, careers, emotional wellbeing and the way people think about their future.

Paris wanted to use the lessons he had learned to help others navigate these difficulties.

Through his coaching work, he focused on personal development, wellbeing and improving quality of life.

He encouraged people to recognise that, although they may not be able to return to the person they were before a major life event, they can still create a meaningful future.

Reinventing Yourself After Illness

One of Paris’s most important messages was:

“You have to reinvent who you are.”

For him, this did not mean ignoring the difficulties of living with a brain tumour or pretending that recovery was easy.

It meant accepting that some aspects of life had changed and deciding how to move forward from there.

Paris understood how difficult it could be to lose confidence in your body or question your identity after illness.

But he believed that people could gradually rediscover their strengths, explore new interests and find a sense of purpose.

His personal experience had inspired him to support others facing their own challenges.

Paris’s Advice for Others Living With a Brain Tumour

Throughout our conversation, Paris returned to the importance of looking after emotional wellbeing as well as physical health.

His experiences had taught him that recovery can continue long after someone leaves hospital.

For anyone facing a brain tumour diagnosis or trying to adjust to life after treatment, several important messages emerged from his story.

Give Yourself Permission to Change

Life after a brain tumour may not look exactly as it did before diagnosis.

Physical abilities, energy levels, emotions and priorities can change.

Paris encouraged people to recognise these changes without feeling that they had failed simply because they could not immediately return to their previous routines.

Don’t Ignore Your Emotional Wellbeing

Depression, anxiety and changes in confidence can have a significant impact on recovery.

Paris’s own experiences demonstrated how important it can be to seek emotional support alongside medical treatment.

Nobody should feel they have to manage these difficulties entirely alone.

Recognise the People Supporting You

Paris also wanted to acknowledge the contribution of carers, partners and family members.

He understood that the people supporting someone through illness can experience considerable stress themselves.

Recognising their efforts, listening to their concerns and making sure they have access to support can benefit everyone involved.

Focus on Quality of Life

For Paris, recovery was not simply about surviving his brain tumour.

It was about finding ways to improve his everyday life, rebuild his confidence and reconnect with the things that mattered to him.

Progress did not always mean reaching a major milestone.

Sometimes, it meant making small changes that helped him feel more comfortable, confident or hopeful.

What Is a Craniopharyngioma?

A craniopharyngioma is a rare brain tumour that develops near the pituitary gland and hypothalamus, two structures located close to the base of the brain.

Although craniopharyngiomas are generally non-cancerous, their location can make them difficult to treat.

They may put pressure on nearby structures, including the optic nerves, or interfere with normal hormone regulation.

Common Symptoms of Craniopharyngioma

Symptoms can vary depending on the tumour’s location, size and effect on surrounding structures.

They may include:

• Persistent or recurring headaches
• Blurred vision or changes to peripheral vision
• Hormone deficiencies or imbalances
• Unexplained weight changes
• Fatigue and reduced energy
• Increased thirst or urination
• Growth or puberty difficulties in children
• Memory, concentration or sleep difficulties

Not everyone will experience the same symptoms.

How Is Craniopharyngioma Treated?

Treatment depends on individual circumstances and may involve surgery, radiotherapy or a combination of both.

For some patients, complete surgical removal is possible. For others, removing every part of the tumour could risk damaging important surrounding structures.

In those circumstances, doctors may recommend further treatment or monitoring.

Some people also require long-term hormone replacement and follow-up with an endocrinologist.

Paris’s experiences highlight why treatment for a tumour near the pituitary gland can affect more than one aspect of a person’s health.

What Is the Difference Between Cushing’s Disease and Cushing’s Syndrome?

Cushing’s syndrome is the medical term used to describe a collection of symptoms caused by prolonged exposure to excessive levels of cortisol, a hormone involved in regulating metabolism and the body’s response to stress.

Cushing’s disease is a specific form of Cushing’s syndrome caused by an ACTH-producing tumour of the pituitary gland.

Cushing’s syndrome can also develop for other reasons, including long-term use of glucocorticoid steroid medication.

Possible symptoms include weight gain, particularly around the abdomen and face, muscle weakness, fatigue, high blood pressure, changes in blood sugar, thinning skin and mood changes.

Because these conditions can have different causes, accurate diagnosis is important.

Treatment depends on the underlying cause and should be managed by an appropriate medical specialist.

Anyone taking prescribed steroid medication should not suddenly stop or change their dose without medical advice.

Looking Beyond a Brain Tumour Diagnosis

Paris’s story shows how a brain tumour can affect far more than the part of the brain where it develops.

His experiences began with headaches, tiredness and unexplained changes to his body.

What followed included a craniopharyngioma diagnosis, brain surgery, Gamma Knife radiosurgery, hormone-related complications and significant emotional challenges.

But perhaps the most important part of his journey is what happened after treatment.

Paris had to adjust to a body that felt unfamiliar, confront feelings of depression and anxiety, and reconsider the life he had previously imagined for himself.

He also came to appreciate the extraordinary support of his wife and the importance of his faith.

Rather than allowing his experiences to be the only thing that defined him, Paris began using them to help other people facing major challenges.

His story is a reminder that surviving a brain tumour and recovering from its effects are not necessarily the same thing.

Recovery can involve rebuilding confidence, relationships, identity and a sense of purpose alongside physical health.

And although life after a brain tumour may be different from the life someone once expected, there can still be opportunities to find meaning, connection and fulfilment.

Thank you, Paris, for sharing your story with Aunty M Brain Tumours and speaking so openly about the physical and emotional realities of living beyond a brain tumour diagnosis.

Your experiences will help others understand that they are not alone in finding recovery difficult, and that asking for support is an important part of moving forward.

Connect With Paris Dancy

Paris uses his experiences and professional background to support people interested in improving their wellbeing, confidence and quality of life.

You can learn more about his work through his website and social media.

Website: GTP Coach

TikTok: @GTPcoach

Read More Craniopharyngioma Stories

Paris’s journey is one of many different experiences of living with a craniopharyngioma.

Every person’s diagnosis, treatment and recovery will be different, but hearing from others can provide reassurance and a better understanding of what life with this rare brain tumour may involve.

Explore more personal experiences in our Craniopharyngioma Stories collection.

Where to Go After a Craniopharyngioma Diagnosis

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

The Brain Tumour Charity

www.thebraintumourcharity.org

Provides information about brain tumour symptoms, diagnosis, treatment and life after treatment, alongside support for patients and families.

The Pituitary Foundation

www.pituitary.org.uk

Offers information and support for people affected by pituitary conditions, including hormone disorders and the long-term consequences of treatment.

Brainstrust

www.brainstrust.org.uk

Provides personalised support to people living with brain tumours and their families.

Brain Tumour Support

www.braintumoursupport.co.uk

Offers emotional and practical support for people affected by brain tumours.

Your Specialist Medical Team

People living with craniopharyngioma may require ongoing care from a neurosurgeon, endocrinologist, ophthalmologist or other specialist.

Your medical team can advise on appropriate monitoring, medication and support for any long-term effects of treatment.

Medical disclaimer: This article shares Paris’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.