My brain is falling out – bouncing on my trampoline revealed the first signs something was wrong
EMILY Cockerham was a healthy child – until one day, bouncing on a trampoline triggered a splitting headache.
That moment was the first sign of a rare condition that would cause her brain to slip out of her skull.
Now 19, Emily has endured excruciating pain caused by Chiari malformation, a disorder where the lower part of the brain falls out of the skull and presses into the spinal canal.
“I took it quite lightly at first,” the teen from Devon, England, said.
“I was so relieved to have answers and didn’t know how severe it was or how much it would control my life.
“I also didn’t realise at this point that there was no permanent cure and it is a chronic condition.”
Emily’s first warning sign came when she was just seven years old.
She said: “When I would bounce on my trampoline, I noticed I was getting headaches after only just 10 minutes of playing.
“At the time, I thought this was normal, so I didn’t tend to complain of my head pain to my parents – so unfortunately, they weren’t aware of my first signs of Chiari malformation until years later.”
By age 11, the headaches intensified, spreading to her neck and shoulders during team sports sessions.
“I often complained about my pain, but my parents – along with me – just believed these were growing pains or from playing too much netball,” she recalled.
Her symptoms worsened as she reached her teens.
By 14, the pain had become unbearable, frequently leaving her bedridden.
She said: “I became almost bedbound and could barely even sit up due to the severity of the pain, dizziness, fatigue, neck and back pain, and many more symptoms.
“I would also often drop to the floor due to pain, which is called a drop attack.”
Despite repeated visits to A&E, doctors struggled to diagnose her.
Tests came back normal, and they initially suspected migraines.
But Emily pushed for further testing, and in October 2021, an MRI finally confirmed Chiari malformation.
Treatment for the condition varies, but in Emily’s case, it required brain and spinal surgery.
‘Pushing against my brain’
Just two days after her 16th birthday, she underwent an operation to relieve pressure on her brain.
“I wasn’t worried to have the surgery because I was at the point where my symptoms were so bad that I was desperate for relief,” she said.
“In the surgery, a piece of my skull and top part of my spine was removed – these were the pieces of bone pushing against my brain – then my brain lining was opened and a small piece of my cerebellum was removed,” she added.
“My brain lining was then expanded using a skin graft from inside my head, to give my brain space – meaning spinal fluid was able to flow around my brain to relieve the pressure in my skull.”
Following the procedure, she initially saw an improvement and was able to return to school and social activities.
But within a year, the symptoms returned – this time because a tight filum was pulling her brain down even further.
In 2023, Emily discovered she was eligible for a specialist surgery in Barcelona.
She fundraised and used her savings to pay for the £17,000 procedure, which she underwent in November 2024.
“Thankfully, this surgery has prevented my condition from worsening and has already started to improve my symptoms and pain,” she said.
Despite making progress, the condition continues to affect her daily life.
“I am currently unable to work, which is very frustrating as I don’t feel as in control of my earnings and don’t feel as independent as I wish to,” Emily explained.
“Also, due to my symptoms, I haven’t managed to pass my driving test yet as I can only attend lessons when I feel well enough, which has not been often enough to learn properly.”
NEW HOPE
She also missed out on much of her teenage years.
She said: “Growing up, I missed a lot of secondary school because of my pain, and this led to missing out on a huge part of my social life as well.
“I felt extremely left out watching everyone else my age move on to college, work and start to drive.
“I feel quite behind [now] on everything I should’ve been doing as a teen.”
Despite the challenges, Emily remains hopeful.
“I’ve been going swimming in a hydrotherapy pool once a week to help improve my symptoms and speed up my recovery,” she said.
“And have also been doing exercises and hope to start physio soon,” she added.
Emily also feels more able to go out with friends and hopes to pick up driving lessons this year to help gain some “independence.”
She said: “I feel like I’m finally catching up on everything I’ve missed, which is a big relief for me.”
What is a Chiari malformation?
A Chiari malformation is where the lower part of the brain pushes down into the spinal canal.
There are four main types, but type 1, called Chiari I, is the most common.
In someone with Chiari I, the lowest part of the back of the brain extends into the spinal canal.
This can put pressure on the brainstem and spinal cord, and obstruct the flow of fluid.
The severity of Chiari malformations can vary from person to person, but generally:
- Chiari I malformations are not considered life-threatening
- Some people experience painful headaches, movement problems and other unpleasant symptoms but many people will not have any symptoms
- There’s a chance of developing syringomyelia (where a fluid-filled cavity called a syrinx develops in the spinal cord), which can damage the spinal cord if not treated promptly
- Surgery can usually stop the symptoms getting worse and can sometimes improve them, although some problems may remain
Many people with a Chiari I malformation will not have any symptoms.
Sometimes they’re only found after an MRI scan of the brain is carried out for another reason.
If symptoms do develop, they can include:
- Headaches – these are usually felt at the back of the head and may be brought on or made worse by coughing, straining, sneezing or bending over
- Neck pain
- Dizziness and balance problems
- Muscle weakness
- Numbness or tingling in the arms or legs
- Blurred vision, double vision and sensitivity to light
- Swallowing problems
- Hearing loss and tinnitus
- Feeling and being sick
- Insomnia and clinical depression
Treatment will depend on how severe the symptoms are.
Painkillers can help relieve any headaches and neck pain.
But if your headaches are severe or you have problems caused by the pressure on your spinal cord – such as movement difficulties – surgery may be recommended.
Source: NHS