Kristina’s Posterior Fossa Ependymoma Story: Brain Surgery, Recurrence and Choosing Joy

Diagnosed with a posterior fossa ependymoma in 2013, Kristina Schnack Kotlus underwent 16 hours of brain surgery. Four years later, she faced another diagnosis when the tumour spread to the tissues surrounding her spinal cord. Through treatment, motherhood and the challenges of survivorship, Kristina found strength in family, faith, friendship and a good sense of humour.

When Persistent Headaches Turned Out to Be a Brain Tumour

For months, Kristina Schnack Kotlus knew something was wrong.

The first sign was surprisingly ordinary. She could no longer lie on her stomach comfortably to read a book.

As time passed, the symptoms became much more difficult to ignore.

She began experiencing severe headaches, particularly when sitting up in bed in the morning. The pain was intense and unlike anything she had previously experienced.

Eventually, Kristina visited the emergency department, hoping to find an explanation.

Unfortunately, her symptoms were dismissed as migraines.

She was told, in effect, to toughen up and carry on.

For another five months, that was exactly what she tried to do.

Then one morning, she collapsed.

Doctors later discovered that Kristina had developed hydrocephalus, a build-up of cerebrospinal fluid that can increase pressure inside the skull.

It was a frightening development, but it finally led to the investigations she needed.

A compassionate neurologist listened to Kristina’s concerns and arranged an MRI scan, initially to rule out a blood clot because of her family history.

The results revealed something completely unexpected.

Kristina had a brain tumour.

Diagnosed With a Posterior Fossa Ependymoma in 2013

In 2013, Kristina was diagnosed with a posterior fossa ependymoma, a rare brain tumour developing in the lower, back part of the brain.

Her tumour was approximately the size of a citrus fruit and had grown around the fourth ventricle, a fluid-filled cavity within the brain.

It was also closely entwined with her brainstem and nearby blood vessels.

The brainstem controls several essential functions, making surgery in this area particularly complex.

Kristina needed an operation to remove the tumour and relieve the pressure caused by hydrocephalus.

She was booked for a craniotomy that would last approximately 16 hours.

For Kristina and her family, it marked the beginning of a life-changing journey.

Sixteen Hours of Brain Surgery

Kristina underwent a lengthy operation to remove the tumour.

Despite its difficult location, her neurosurgical team was able to achieve what they believed was a complete removal.

This was especially significant because the tumour had extended around important structures near her brainstem.

During surgery, a temporary shunt was used to help manage the hydrocephalus.

Fortunately, removing the tumour resolved the blockage affecting the flow of cerebrospinal fluid, and the shunt was removed before Kristina left intensive care.

The operation had been successful, but recovery was far from straightforward.

Waking Up After Brain Surgery

When Kristina woke following surgery, she was in pain.

She also found it difficult to process what was happening around her, particularly when several people were talking or there was too much noise.

For someone who was naturally outgoing and confident, the change was unsettling.

She described herself as feeling unusually slow and timid.

There were physical changes, too.

Kristina experienced constant pins and needles down the left side of her body, a sensation that continued long after surgery.

She also experienced occasional headaches associated with tension in the muscles affected by the operation.

Although these symptoms were difficult, Kristina considered herself fortunate that she could manage them.

She had survived a complicated 16-hour operation, and the surgeons believed they had successfully removed the tumour.

But four years later, she received another devastating diagnosis.

When the Ependymoma Returned in 2017

In 2017, Kristina began noticing new symptoms.

She experienced numbness and discomfort in her legs, hips and lower back.

Because of her previous diagnosis, further investigations were arranged.

An MRI scan revealed that her ependymoma had returned.

This time, however, it was not confined to the original area of her brain.

Kristina had developed leptomeningeal metastases, meaning the tumour had spread to the delicate membranes surrounding her brain and spinal cord.

The discovery changed her treatment options considerably.

The new tumours were located in areas where surgery could cause serious damage.

Doctors were concerned that attempting to remove them might leave Kristina paralysed or affect important functions such as bladder and bowel control.

Her original neurosurgeon felt that even taking a biopsy would be too dangerous.

Kristina and her family faced another difficult decision.

Why a Second Opinion Made Such a Difference

Rather than proceeding without knowing the precise grade of the new tumour, Kristina sought another medical opinion.

She found a surgeon who was prepared to obtain a biopsy.

The procedure involved a laminectomy, an operation in which part of a vertebra is removed to provide access to the spinal canal.

For Kristina, the biopsy became a crucial part of her treatment journey.

Because the ependymoma had spread so extensively, her medical team had initially suspected it might be a grade 3 anaplastic ependymoma.

However, the biopsy revealed something different.

The tumour was grade 2.

Although this was still a serious diagnosis, the result helped her doctors make a more informed treatment decision.

Her treatment plan was changed to include further radiotherapy.

Kristina’s experience highlights the value a second opinion can sometimes provide, particularly when treatment carries significant risks or the precise tumour classification remains uncertain.

Radiotherapy: The Treatment That Tested Kristina’s Strength

Kristina had already experienced radiotherapy to her brain, but she found the treatment physically and emotionally exhausting.

For each session, she had to lie still while a fitted mask held her head in position.

At first, she managed reasonably well.

But after several weeks, the experience became increasingly difficult.

She described having to talk herself through the process, persuading herself to remain calm while the mask secured her to the treatment table.

The cumulative fatigue was particularly challenging.

By the end of treatment, Kristina was so exhausted that even drinking through a straw was difficult.

Her husband had to help her take in fluids with a spoon to avoid dehydration and the need for intravenous fluids.

For someone who was normally energetic and busy, the loss of strength was hard to accept.

Radiotherapy affected not only her body but also her ability to concentrate and process information.

The fatigue and brain fog were far more intense than she had expected.

Having Radiotherapy to Her Spine

When Kristina later underwent spinal radiotherapy, the preparation was very different.

Rather than a fitted head mask alone, she needed a large body mould to keep her correctly positioned.

The fitting process was memorable, involving a room full of medical professionals and a vacuum-style mould that shaped around her body.

It was hardly Kristina’s favourite experience.

However, she found the spinal radiotherapy itself easier to tolerate than the final weeks of treatment to her brain.

That did not mean it was without side effects.

During the last weeks, she developed severe heartburn.

When she finally contacted her oncology nurse to ask what medication she could safely take, several members of the medical team called her back.

They were so accustomed to Kristina rarely complaining that they assumed something must be seriously wrong.

Thankfully, a simple treatment for the heartburn provided relief.

It was the sort of experience Kristina could later recount with her characteristic humour.

Chemotherapy and the Side Effects Nobody Could See

Kristina also underwent approximately a year of chemotherapy with temozolomide, commonly known by the brand name Temodar.

Compared with some of the cancer treatments she had seen others experience, Kristina felt that she tolerated chemotherapy relatively well.

However, she did develop troublesome eczema.

She attributed this to an inactive ingredient in the medication that she believed triggered an allergy.

The most difficult part of chemotherapy was not necessarily an obvious physical change.

It was the exhaustion.

Kristina kept her hair and often looked much as she had before treatment.

To people around her, she appeared relatively well.

But inside, she was struggling with fatigue and reduced energy.

Sometimes friends and acquaintances seemed to forget she was still undergoing treatment.

They could become frustrated when she was unable to do the things she would normally manage.

For Kristina, this was one of the most difficult aspects of living with a brain tumour.

Looking well did not mean she was feeling well.

Living With the Invisible Effects of Brain Surgery

Even after treatment, Kristina continued experiencing some lasting effects.

The left side of her body had a persistent pins-and-needles sensation.

She also experienced headaches and discomfort that could limit what she was able to do.

To someone meeting her for the first time, these difficulties were not necessarily obvious.

Kristina looked much like anyone else.

But her body no longer worked exactly as it had before her diagnosis.

There were activities she wanted to do but sometimes avoided because she knew they could worsen her pain or strain her neck.

That could lead to feelings of disappointment, particularly when she worried that she was letting other people down.

Kristina had learned to accept what she called her new normal.

In some ways, she even preferred the person she had become.

Nevertheless, acceptance did not mean that the ongoing difficulties disappeared.

Her experience is an important reminder that recovery from brain surgery can involve changes other people cannot see.

The Emotional Weight of Survivor’s Guilt

One of the most moving parts of Kristina’s story is her honesty about survivor’s guilt.

She spoke about attending the Race for Hope, a fundraising event supporting brain tumour research.

During the survivor’s lap, she sometimes struggled with complicated emotions.

She was grateful to be there, but she was also acutely aware of others facing much more aggressive diagnoses.

Some of the people walking beside her might not survive until the following year’s event.

Kristina found that incredibly difficult.

At times, she questioned why she had been fortunate enough to survive when others had not.

Rather than pretending those feelings did not exist, she tried to channel them into something meaningful.

She became involved in fundraising for brain tumour research, attended advocacy events and volunteered as a cancer mentor through Imerman Angels.

Helping other people gave her a way to honour those she had met and make a positive contribution.

Learning to Make Space for Difficult Feelings

Kristina’s positive outlook is a significant part of her personality, but she was very clear that positivity did not mean ignoring difficult emotions.

There were days when fear, sadness and frustration felt overwhelming.

Rather than constantly battling those feelings, she developed a small routine.

She would go somewhere private, set a timer for ten minutes and allow herself to experience whatever she was feeling.

She might cry, worry or simply acknowledge that she was having a difficult day.

When the timer finished, she would try to redirect her attention.

For Kristina, this was a personal way of giving difficult emotions some space without allowing them to dominate the rest of her day.

It was not about pretending that everything was fine.

It was about recognising that unpleasant feelings were part of her experience, too.

Different people need different ways of coping, and professional psychological support can also be valuable when distress becomes difficult to manage.

Family, Faith and Finding Reasons to Keep Going

Throughout her treatment and recovery, Kristina found strength in her Christian faith and her family.

At the time of our interview, she was 36 and the mother of three children, aged 16, 14 and 12.

She homeschooled her children and helped coordinate classes for other families in her community.

She also taught writing and science, volunteered, and spoke to church groups, mothers’ groups and cancer support communities.

Her days were filled with activities that mattered to her.

Above all, Kristina wanted her children to understand that difficult experiences did not have to prevent someone from living a meaningful life.

Her faith gave her strength when circumstances felt uncertain.

Two Bible passages were particularly important to her: Joshua 1:9, with its message of courage, and Micah 6:8, which speaks about justice, mercy and humility.

She found comfort in the idea that even on days when pain or fatigue limited what she could accomplish, her life still had purpose.

Choosing Joy Even on the Difficult Days

One of Kristina’s favourite ways of encouraging her family was through something she called a Blessing Book.

The idea was simple.

Family members would write down good things that happened, even on days that had otherwise been difficult.

It might be a kind message, an enjoyable moment together or something small that made them smile.

Over time, the book became a collection of positive memories.

On particularly difficult days, Kristina could look back through it and remind herself that good things had happened even during periods of uncertainty.

For her, choosing joy did not mean denying that life could be painful.

It meant actively noticing the moments that were still worth celebrating.

That philosophy became an important part of her writing and public speaking.

Writing I Quit: Facing Cancer With Faith, Family and Friends

Kristina has always enjoyed writing.

She described herself as someone with a constantly active inner monologue, full of ideas, observations and stories.

Writing gave her somewhere to put those thoughts.

Her experiences with brain cancer eventually became part of her book:

I Quit: Facing Cancer with Faith, Family & Friends (And Sarcasm. There’s a Lot of That, Too.)

The title captures Kristina’s personality wonderfully.

There is faith, family and friendship, but also the sarcasm and humour that helped her through many difficult moments.

The book explores her experiences of cancer and the people who supported her.

It also includes practical advice for friends and relatives who want to help someone facing a serious diagnosis.

Kristina understood that people often care deeply but do not know what to say or do.

Her writing offered a way to share what she had learned while encouraging others to approach difficult situations with compassion and authenticity.

Buy Your Very Own Copy:

Kristina’s Advice for Supporting Someone With a Brain Tumour

One of Kristina’s strongest messages was that friends and family do not have to solve everything.

A brain tumour diagnosis can leave loved ones feeling helpless.

They may rush to offer medical suggestions, search the internet for treatments or encourage a particular course of action.

Although these responses often come from a place of love, they may not be what the person needs.

Kristina encouraged people to concentrate on being present.

Practical gestures could mean far more than elaborate advice.

Offering to do a load of washing, sending a thoughtful message or simply letting someone know they were being remembered could make a genuine difference.

She particularly appreciated messages that did not demand an immediate reply.

When someone is exhausted by treatment, even returning a phone call can feel like another task.

Her message to loved ones was simple: listen, offer help without pressure and respect the person’s choices.

Finding Her Voice Through Brain Tumour Advocacy

Kristina’s experiences also led her towards advocacy and community support.

She raised money for brain tumour research and became involved in events that brought patients, survivors and families together.

Through Head to the Hill, she supported efforts to make the needs of people affected by brain tumours more visible.

As a cancer mentor, she also offered encouragement to others facing their own diagnoses.

Kristina knew that no two people would experience exactly the same journey.

But she believed that sharing personal experiences could help someone else feel understood.

Her own experiences of surgery, recurrence and treatment gave her an insight into the worries that often accompany a brain tumour diagnosis.

She wanted to use that understanding to help other people.

Find Kristina Schnack Kotlus on Social Media:

Website

Facebook Page

Instagram

Twitter

The Humour That Helped Kristina Through It All

Despite everything she had experienced, Kristina never lost her sense of humour.

One story she shared involved a radiation oncologist explaining that doctors are trained to think of common diagnoses before rare ones.

Because Kristina had such an unusual diagnosis, the doctor compared her to a zebra.

When she shared the story on Facebook, a friend suggested that she was something even more unusual: a magical unicorn.

The joke stuck.

Soon, Kristina began receiving unicorn gifts.

Before long, she had accumulated an enormous collection, including unicorn salt and pepper shakers.

It became a light-hearted reminder of her unusual journey.

And perhaps that is one of the things that makes Kristina’s story so memorable.

She did not pretend that brain cancer was funny.

But she found opportunities to laugh, even when life was difficult.

What Kristina’s Ependymoma Story Teaches Us

Kristina’s story is about far more than a rare brain tumour.

It began with months of worsening symptoms that were initially dismissed.

An MRI eventually revealed a large posterior fossa ependymoma, leading to a 16-hour operation.

Although surgeons believed they had completely removed the tumour, she faced another diagnosis four years later when the disease spread to the tissues surrounding her spinal cord.

Further investigations, a biopsy, radiotherapy and chemotherapy followed.

Alongside the physical challenges came fatigue, persistent neurological symptoms and the emotional weight of survivor’s guilt.

Yet Kristina’s story is also filled with the things that make life meaningful.

Her children. Her husband. Her faith. Her writing. Her friendships.

And, of course, her wonderful collection of unicorns.

One of the most important lessons from her experiences is that living well after a brain tumour does not necessarily mean living without symptoms, fear or difficult days.

Sometimes it means adjusting your expectations, accepting help, finding ways to support others and recognising the small moments of happiness that still exist.

Kristina wanted to use the time she had to make a positive difference.

Through her writing, advocacy and mentoring, she was doing exactly that.

Thank you, Kristina, for sharing your experiences with Aunty M Brain Tumours and for speaking so openly about the realities of brain surgery, recurrence, treatment and survivorship.

Your story reminds us that behind every diagnosis is a person with a family, a personality, a sense of humour and a life that deserves to be seen.

This article reflects Kristina’s experiences as originally shared in January 2021. It is not an update on her current health or circumstances.

What Is a Posterior Fossa Ependymoma?

A posterior fossa ependymoma is a brain tumour that develops in the lower, back part of the brain.

Ependymomas are tumours of the central nervous system that can occur in the brain or spinal cord.

The posterior fossa contains important structures, including the cerebellum, brainstem and fourth ventricle.

Because of this location, an ependymoma may interfere with cerebrospinal fluid circulation or place pressure on structures responsible for balance, movement and other essential functions.

Common Symptoms of Posterior Fossa Ependymoma

Symptoms can vary, but may include:

• Persistent or worsening headaches
• Nausea and vomiting
• Dizziness or balance difficulties
• Changes in coordination
• Visual disturbances
• Symptoms caused by hydrocephalus
• Weakness or other neurological changes

Kristina’s earliest symptoms included severe positional headaches and difficulty lying comfortably on her stomach.

Eventually, the pressure caused by hydrocephalus contributed to her collapse.

Can an Ependymoma Return After Surgery?

Yes. Some ependymomas can recur after treatment, even when the original tumour appears to have been completely removed.

In some cases, tumour cells can spread through cerebrospinal fluid to other parts of the brain or spinal cord.

This is sometimes referred to as leptomeningeal dissemination or leptomeningeal metastases.

Kristina experienced this type of spread in 2017.

Her experience demonstrates why continued monitoring is important following an ependymoma diagnosis.

How Is Ependymoma Treated?

Treatment depends on several factors, including the tumour’s location, grade, molecular features, whether it has spread and the person’s previous treatment.

Options may include:

• Surgery to remove as much tumour as safely possible
• Radiotherapy
• Chemotherapy in selected circumstances
• Biopsy to establish the diagnosis when appropriate
• Follow-up MRI scans to monitor the brain and spinal cord
• Clinical trials where suitable

The classification of ependymomas has also evolved, with modern diagnostic approaches using molecular information alongside traditional microscopic findings.

Every diagnosis is different, and treatment should be discussed with a specialist neuro-oncology team.

Read More Ependymoma Stories

Kristina’s experience is one of several personal ependymoma stories shared through Aunty M Brain Tumours.

Other people may experience different symptoms, treatment approaches or long-term effects.

You can also read:

• Linda Rickford’s Son’s Ependymoma Story — explore the related interviews listed on Aunty M Brain Tumours.
• More Ependymoma Interviews — stories from people and families affected by this tumour type.

Reading someone else’s experiences can provide reassurance, but their diagnosis and outcome will not necessarily be the same as yours.

Where to Go After an Ependymoma Diagnosis

If you or someone you love has been diagnosed with an ependymoma, there are organisations offering reliable information, emotional support and practical guidance.

The Brain Tumour Charity

Visit The Brain Tumour Charity

Provides information about ependymoma, brain tumour treatment, recovery and support services for patients and families.

Brainstrust

Visit Brainstrust

Offers personalised support to people affected by brain tumours, including help with treatment decisions, emotional wellbeing and life after diagnosis.

Brain Tumour Support

Visit Brain Tumour Support

Provides practical and emotional support for patients, families and carers.

National Brain Tumor Society (USA)

Visit National Brain Tumor Society

Provides resources, advocacy opportunities and information about brain tumour research.

National Cancer Institute (USA)

Read about ependymoma

Offers medically reviewed information about ependymoma diagnosis, tumour classification and treatment options.

Your Specialist Medical Team

Ependymoma patients may require long-term follow-up with neurosurgeons, neuro-oncologists, rehabilitation specialists or other healthcare professionals.

If you are experiencing ongoing neurological symptoms, fatigue, pain or emotional difficulties, ask your medical team about suitable support and referrals.

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

Would You Like to Share Your Ependymoma Story?

At Aunty M Brain Tumours, I believe that every person’s experience deserves to be heard.

Whether you have recently been diagnosed, undergone treatment, are living with long-term effects or are supporting someone you love, your experiences could help another person feel less alone.

Find out how to share your brain tumour story.