Emily Cockerham: The girl whose brains are falling out of her skull because she has Chiari malformation

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Emily Cockerham: The girl whose brains are falling out of her skull because she has Chiari malformation

She’s the girl whose brains are literally falling out of her skull.

Meet Emily Cockerham, who has a rare and painful condition whereby the lower part of her brain falls out of her skull and puts pressure on the spinal canal.

But it took years of doctors visits and dead ends before the 19-year-old was finally diagnosed. She has Chiari malformation.

It is a chronic condition with treatment varying. In Emily’s case, brain and spinal surgery has been needed.

How did it all start? Up until Emily was seven, she was a healthy girl. But it all changed when jumping on her trampoline at home in Devon, England, one day.

She got a splitting headache. From then on, she would get a headache within minutes of bouncing on her trampoline.

Camera IconEmily Cockerham suffers from Chiari malformation. Credit: Emily Cockerham/

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“When I would bounce on my trampoline, I noticed I was getting headaches after only just 10 minutes of playing,” Emily told The Sun.

“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.”

As the years wore on, the headaches became more severe and by the time she was 11, the pain had spread to her neck and shoulders.

“I often complained about my pain but my parents — along with me— just believed these were growing pains or from playing too much netball,” Emily said.

By the time she 14, the pain was frequently leaving her bedridden.

“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,” she said.

“I would also often drop to the floor due to pain, which is called a drop attack.”

Despite repeated visits to various doctors, Emily’s condition remained undiagnosed until October 2021.

“I was so relieved to have answers and didn’t know how severe it was or how much it would control my life,” she said.

“I also didn’t realise at this point that there was no permanent cure and it is a chronic condition.”

Just days before her 16th birthday, Emily had surgery 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 told The Sun.

“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.

“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.”

While the operation brought improvement, within a year her painful symptoms were back.

In November 2024, she raised $35,000 to have an procedure done in Barcelona, Spain.

It worked and her condition, for now, is not worsening. But she is still unable to work.

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“Thankfully, this surgery has prevented my condition from worsening and has already started to improve my symptoms and pain,” Emily said.

“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.

“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.”

But Emily holds out hope for a brighter future.

“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,” she said.

“I felt extremely left out watching everyone else my age move on to college, work and start to drive.

“I feel quite behind on everything I should’ve been doing as a teen.

“I’ve been going swimming in a hydrotherapy pool once a week to help improve my symptoms and speed up my recovery.

“I feel like I’m finally catching up on everything I’ve missed, which is a big relief for me.”

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