My CSF Leak Story- please don’t ignore the signs 

I want to share my CSF leak story, in the hope that it helps anyone going through this to feel less alone and to please push for answers.  

A Life Turned Upside Down 

I’m Linzi, a 40-year-old personal trainer, online coach, wife and mum to my amazing 6-year-old daughter. Health, fitness and movement has been a huge part of my life for the last 15 years and now is my identity. I’ve always been someone who thrives on energy, routine and keeping moving. Then suddenly my world was turned upside down…  

“Just Headaches” — Or So I Was Told 

My story actually started back in December 2024. It was “just headaches” at first. The kind you try to brush off and take a few pills just to get through the day. I was told it was sinusitis. That felt plausible, so I carried on. 

By January, things had shifted. I’d developed tinnitus, dizziness, nausea… and was then told it was labyrinthitis. Again, I tried to accept that. You trust what you’rebeing told by medical professionals, don’t you? But deep down, I knew something wasn’t right. 

The Day Everything Changed 

Then in March, everything changed. I woke up one morning and physically couldn’t lift my head off the pillow. The pain was like nothing I’ve ever experienced- a thunderclap headache that made even the thought of standing unbearable. That’s when I called NHS 111 and was told to go straight to A&E. 

At the hospital, I had to really push to be taken seriously. I literally lay down on the floor in the waiting room as I couldn’t bear to even sit on a chair. They could see I was struggling and found me a bed in their Same Day Emergency Care facility. I remember saying, “I know something is wrong with my head, I need a scan.” Eventually, they agreed to a CT. 

That scan showed low pressure in my brain - what they called intracranial hypotension. But then… I was sent home. Bed rest. Five days. Drink caffeine. “You should be fine.” 

Still Searching for Answers 

They did agree to an MRI, but there was no urgency. And at that point, I didn’tfully understand what was happening inside my body. 

At the same time, I was due to fly to Australia with my little girl for the Easter half term. I asked multiple times if it was safe to fly and was told yes, so I went armed with pain relief and a forced smile. Looking back now, I realise how dangerous that could have been. I was incredibly lucky. 

“Trust yourself. If something doesn’t feel right — don’t stop pushing until someone listens.” 

Something still didn’t sit right with me, so I chased and chased for that MRI. Eventually, I managed to get a cancellation on 21st May. I just knew something serious was going on, so I expected to hear quickly. 

Instead, I waited five days. It was a bank holiday weekend, and I remember that horrible feeling of just… waiting. Knowing something wasn’t right but not having answers. 

When I finally called to chase, I was told my results had been sent in the post. I asked for them to confirm over the phone which they refused. I literally beggedfor them to have a neurologist call me back as I just knew something was really wrong. 3 hours later, my phone rang and everything changed in an instant. 

The Call That Changed Everything 

“You need to get here urgently. You have multiple and severe bleeds on your brain and need urgent treatment.” I actually questioned if they had the right person. I asked if they’d mixed my scan up with someone else’s. They hadn’t. 

I was told I had a subdural hematoma measuring 17mm. I didn’t fully understand what that meant at the time, but I knew it was serious. Of course I googled it. Then immediately wished I hadn’t.  

Weirdly, a very small part of me felt relief- I wasn’t imagining it, I wasn’t being dramatic. But mostly… I was absolutely terrified. I genuinely thought I might not see my daughter grow up. 

“I genuinely thought I might not see my daughter grow up.” 

I arrived at A+E and was immediately admitted, then placed on strict horizontal bed rest with a commode next to my bed with constant monitoring. Every day the doctors would visit but no one seemed to know what they were going to do with me.  

The night before my 40th birthday, after 8 days in hospital, I was told they were transferring me at some point in the night to another hospital because the bleed wasn’t resolving. The conversation turned to brain surgery to drain it. 

Fear, Shock, and Uncertainty 

That’s a surreal moment I don’t think I’ll ever forget- being told you may need brain surgery, while still trying to process how you even got there. And of course, it wasn’t how I’d envisioned celebrating my 40th!  

What made it harder was that I kept raising the possibility of a CSF leak, and it wasn’t immediately taken seriously. I’d done my own research at this point because I had to understand what was happening to me. 

At one point, a doctor actually asked if I was medically trained. I wasn’t - I’d just refused to ignore what my body was telling me. 

A Turning Point — and a Message of Hope 

Eventually, they agreed. This was a spinal CSF leak, specifically in my cervical spine, up near my neck. They also confirmed the pressure in my head was still low, which also posed a much higher risk to brain surgery so they decided to treat my CSF leak first with the hope that the bleed will disperse on its own.  

Because of the location, I needed a targeted and CT guided blood patch. That procedure ended up being the turning point and the team who treated me were incredible.  

Since having the blood patch, the relief has been huge. The intense, debilitating symptoms eased, and I can finally feel some sense of normality again. 

Recovery and the Mental Impact 

But it hasn’t just completely disappeared. I still get daily headaches. And mentally… it can be a lot. The anxiety that comes with every headache or wave of dizziness is hard to explain unless you’ve been through it. Your brain immediately goes to worst-case scenario. I think a part of that will stay with me. 

But so will the gratitude. I’m here. I got through it. And I’m back doing what I love- back in the gym, moving my body again, rebuilding. 

If there’s anything I’d want someone reading this to take away, it’s this: 

Trust yourself. If something doesn’t feel right, don’t stop pushing until someone listens. You know your body better than anyone. 

I’m incredibly grateful that I kept asking questions, kept pushing, and didn’t just accept the first answer. And I’m so grateful to still be here to tell this story.