My brain almost killed me

When Steff started to experience unbearable headaches and blurred vision, she had no idea that a simple MRI scan would send her life spiralling out of control for months to come.

Steff says she always had issues with her eyes. She was previously diagnosed with swelling behind them in 2001 after a routine eye check, and was sent for a diagnostic lumbar puncture to see if the problem was being caused by intracranial hypertension (pressure in the brain).

After a few weeks, the lumbar puncture came back negative, nothing more was said about the problem and she went on with her life.

It wasn’t until 2016, when Steff began to experience severe and recurring headaches, and was told by her optician that she once again had swelling behind the eyes, that she began to wonder if there was more to her head and eye problems than first thought.

It had soon got to a point where Steff’s vision was really suffering. That’s when she realised something was wrong.

She said: “I’d had headaches for a while, I was standing up and losing my vision and I was quite concerned about the fact I couldn’t see properly and that’s what led me to go to the doctors.

“They [the doctors] said, oh you have sinusitis, which was a bit ridiculous, but I think they didn’t obviously look at me and think there was anything more sinister going on at the time but that’s when it all started.”

After a second visit to the doctors, she was told to go to A&E straight away.

Steff was sent for an emergency MRI on her head and it soon became clear that something more complex was occurring.

When Steff was admitted to hospital, the doctors still didn’t really know what was wrong with her. They suspected she had a Chiari Malformation, a relatively unknown and rare condition that can cause serious complications if left untreated.

Steff was admitted to hospital almost immediately and spent several weeks moving from one hospital to another, until she eventually ended up at Kings College hospital in London. It was here that she was told she’d need to have another lumbar puncture to try and relieve the pressure on her brain.

This time though, she found out the procedure might leave her brain damaged or even worse, dead.

The few weeks Steff spent at hospital were, in reality, just the beginning. After undergoing a procedure that could have potentially killed her, she had to spend months off work, recovering both physically and mentally from what she had just experienced.

As a full-time primary school teacher, this was incredibly difficult. Worse still, Steff worried that she might return to find she no longer had a job.

steff hosp 1
Steff in hospital

What is a Chiari Malformation?

This unusual structural defect occurs in the base of the skull and cerebellum, that part of the brain which controls balance.

In a ‘normal’ brain, parts of the brain stem and cerebellum sit above an opening in the skull, allowing the spinal cord to pass through. In those with a Chiari Malformation, this part of the brain actually slips down into the spinal canal.

It only ever develops during birth and is sometimes hereditary.

Some types of malformations are rarer than others, but the problem isn’t well known and can cause serious problems if left untreated.

The cerebellum extending into the spinal cavity

Recurring headaches are the biggest symptom of Chiari Malformations, but other symptoms can include (but are not limited to) blurred vision and light sensitivity, neck pain, balance problems, muscles weakness and tinnitus.

It’s not always easy to spot and often found by accident. Some people can live normal lives with a malformation, whilst others experience life changing issues.

There are a few ways to manage a malformation, from pain medication to surgery. The more radical treatment is ‘decompression’, which can alleviate some of the pressure on the spinal cord and therefore, reduce symptoms.

Steff tells me that whilst this is a popular option in America and is undertaken regularly, UK doctors are reluctant to offer it because of the potential risks. It doesn’t always work and can sometimes make the problem worse.

The Future

The sad truth is, Steff knows she will always have to live with her Chiari Malformation. Like many defects that are relatively uncommon, there’s no permanent ‘cure’ for it, only symptom management.

Steff proudly jokes that her malformation is currently 7mm but says it could drop further at any time and cause her further issues. It requires continual monitoring and there’s no guarantee she won’t face the same problems again in the future.

Steff said: “I have a neurologist who reviews me annually and will keep an eye on me for the rest of life because it can cause complications. I currently have two doctors, one in London and one locally who are responsible for keeping an eye on my eyes, the pressure and the Chiari Malformation.

“They are just trying to figure out if that is causing the headaches because it can become symptomatic and that can happen at any point.”

“There are certain things which I have done a lot of research on about myself. I’m not allowed on trampolines, I’m not allowed on rollercoasters, I can’t go skydiving, I’m not allowed to scuba dive. It might not seem like a big deal but there are now a lot of restrictions imposed on me that I have to be mindful of.”

For now, she’s back at work and managing her symptoms with a concoction of different medications and regular visits to her consultants. The swelling behind her eyes has improved significantly and she says that she is just looking forward to getting her life back to a state that somewhat resembles normal.

Steff happy
Steff with her partner, Jason, after the procedure


You can find out more about Chiari Malformations and how they affect the brain and body at:

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