🤕 Living with Chiari — A Decade of Strength, Struggle, and Survival

I was diagnosed with Chiari malformation in November 2013, and life hasn’t been the same since.

In January 2014, I had decompression surgery. Not because I had time or options, but because a kink in my brainstem left no choice. That surgery saved my life… but recovery?…..that was a whole other story. 🫣

Post-op complications hit fast and hard. Recovery was anything but straightforward, and eventually I needed a VP shunt to manage pressure and cerebrospinal fluid issues. This brought a whole new level of hospital stays, uncertainty, and trying to explain it all to people who had never heard of any of it… myself included.

Since then, life’s been a mix of ups, downs, and times when I’ve genuinely thought (or wished) my head would just fall off. Lately, a lot of my old symptoms have returned… the headaches, dizziness, nerve pain, balance issues, and that bone-deep fatigue only someone with Chiari (or a shunt) truly understands.

So it’s been back into the soul-destroying system that is the NHS. Trying to get proper help through the NHS has been one of the hardest parts. I’m grateful for the care that does exist, but when your symptoms are flaring and appointments are months away, it’s hard not to feel completely lost in the system.

Even the small everyday decisions — like what to do with your hair — become major ones. For me, I have to keep my hair short, not because I want to, but because when it grows the nerve pain is unbearable. Something as personal and expressive as your hair becomes just another thing you have to manage around the pain.

And although it’s only hair, I really struggled (and still do from time to time!) with the fact that the decision is made for me because of pain. As someone who used to wear beehives, updos, plaits, and everything in between… a shaved head took a little getting used to — and that’s without the judgment and questions from others about why I shave my head!

💭 What I’ve Learned Through It All

Surgery isn’t the finish line — in fact, it’s just the beginning.
It’s easy to think brain surgery will fix everything. But for me, it was just the start of a much longer, lifelong journey.

Living with a shunt is like having a second full-time job.
There’s always that quiet worry and the niggling questions…
Is this pain normal? Is something wrong? Should I go in or just wait it out again? Has my shunt blocked? 🤦‍♀️

You constantly have to adapt. Find your new limits. Create new routines. And do whatever makes life that little bit more bearable.

Rest more. Ask for help (still working on that one). Accept some things as the new normal.
And shift every time your health shifts.

There are days I’m angry. Days I’m scared. Days I ask why me…And days I just feel completely over it all.

To Anyone Else Living with Chiari, a Shunt, Both… or Any Other Chronic Illness

I see you.
You’re doing something incredibly hard, even when it doesn’t look like it.
You’re still here, still trying, still carrying a weight that no one else can fully understand — and living life!

If you’re stuck waiting for care, trying to be heard, or just getting through the day one hour at a time… just know you’re not alone.

✌🏼💜💫 

Chiari is only part of my story. I also live with cluster headaches, endometriosis, Ehlers-Danlos Syndrome (EDS), and adrenal insufficiency. Each condition brings its own challenges, and often overlaps into each other. I’ll be sharing more about them in future posts.