September is Chiari Malformation Awareness Month, and every year it reminds me just how much my life changed in such a short space of time.
When I first started experiencing symptoms, I had never even heard of Chiari Malformation. If someone had told me that within months I would be undergoing brain surgery, I would never have believed them.
This is my story.
The Beginning
My symptoms began in August. What started as what I thought was a migraine quickly became something much more.
The headache didn’t go away. Instead, it developed into constant pressure in my head that seemed to follow me everywhere. Alongside the headaches came dizziness, balance problems, exhaustion and insomnia.
I remember feeling frustrated because I knew something wasn’t right, but I couldn’t explain what was happening to me.
At the time I was a busy mum trying to carry on with normal family life. I kept hoping things would improve on their own, but instead my symptoms continued to worsen.
Getting Answers
After various appointments and investigations, I was eventually sent for an MRI scan.
Receiving the diagnosis of Chiari Malformation was overwhelming.
For anyone unfamiliar with Chiari Malformation, it is a neurological condition where part of the brain, known as the cerebellar tonsils, extends down through the opening at the base of the skull. This can affect the flow of cerebrospinal fluid and cause a wide range of symptoms.
Although finally having an explanation for what was happening brought some relief, it also raised a whole new set of worries.
I suddenly found myself learning medical terminology I had never heard before and facing decisions I never expected to make.
When Surgery Became Necessary
Unfortunately, my symptoms progressed quickly.
The headaches and pressure were becoming increasingly difficult to manage, and after discussions with my neurosurgical team, surgery was recommended.
Hearing the words “brain surgery” is terrifying.
As a mum, my biggest fear wasn’t the operation itself. It was being away from my family and wondering how everyone would cope if something went wrong.
The days leading up to surgery were filled with fear, uncertainty and countless questions.
Despite all of that, I knew I had to do it. I wanted the chance to feel better and be more present for my children and family.
Surgery Day
Walking into hospital on the morning of surgery was one of the hardest things I have ever done.
I met with the neurosurgeon, anaesthetist and nursing staff before being taken down for surgery.
Even though I was scared, I felt reassured knowing I was in the hands of an experienced team.
The operation I underwent was Chiari decompression surgery, which aims to create more space at the base of the skull and improve the flow of cerebrospinal fluid.
When I woke up afterwards, I knew the surgery was over, but the recovery journey was only just beginning.
The Early Days of Recovery
Recovery was far more challenging than I expected.
I experienced severe nausea, neck stiffness, shoulder pain and extreme fatigue.
Simple things such as sitting up, walking to the bathroom or changing position felt like huge achievements.
Every small milestone became something worth celebrating.
Putting on my own pyjamas.
Walking a few steps.
Managing a short nap.
Getting discharged home.
Each of those moments felt enormous at the time.
A Setback
Just when recovery seemed to be heading in the right direction, I developed a fever and began feeling increasingly unwell.
The pain worsened, my mobility declined and I struggled to even sit upright.
When my stitches were removed, cerebrospinal fluid began leaking from my wound.
It was frightening.
I was taken back to hospital for assessment and further treatment.
Thankfully, after antibiotics, wound care and close monitoring, things gradually improved and I was able to continue recovering at home.
Learning Patience
One of the biggest lessons Chiari surgery taught me was patience.
I wanted to bounce back quickly.
I wanted to be the mum who could do everything.
I wanted life to return to normal immediately.
Instead, recovery forced me to slow down.
I had to learn that healing takes time.
I had to accept help.
I had to stop feeling guilty for resting.
That wasn’t easy, but it was necessary.
Seeing the Results
One of the most emotional moments came at my follow-up appointment.
After my post-operative MRI scan, my neurosurgeon told me that everything looked excellent.
There were no leaks, the cerebrospinal fluid flow had improved and the surgery had achieved exactly what it was meant to do.
Hearing those words felt like a huge weight had been lifted.
The headaches and pressure had already started improving, and my dizziness and balance problems were gradually getting better too.
Life After Chiari Surgery
Recovery is not a straight line.
There have been good days and difficult days.
There have been moments of frustration, fear and uncertainty.
But there has also been hope.
Today, I am incredibly grateful for the care I received and for how far I have come.
Chiari Malformation changed my life, but it also showed me how resilient we can be when faced with challenges we never expected.
Why I Share My Story
One of the reasons I continue to talk about Chiari Malformation is because so many people have never heard of it.
Before my diagnosis, I certainly hadn’t.
If sharing my experience helps even one person feel less alone, encourages someone to seek medical advice, or helps a newly diagnosed patient understand what they might be facing, then it is worth sharing.
Living with Chiari isn’t easy, but there is support, there is hope, and there are people who understand.
If you have Chiari Malformation yourself, please know that you are not alone.
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Have You Been Affected By Chiari Malformation?
I’d love to hear your story in the comments below.
If you’re currently waiting for diagnosis, surgery, or supporting a loved one with Chiari Malformation, please know you’re not alone.
You can also follow me on Instagram @thethirtysomethingmum where I share life as a mum living with Chiari Malformation.
Thirty Something Mum 
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