A young woman has shared how her brain is “falling out” thanks to a rare condition.
Emily Cockerham was perfectly healthy in early childhood until bouncing on the trampoline started to trigger splitting headaches around the age of seven.
The now, 19-year-old, spent years battling the pain, which turned out to be an early sign of the condition called Chiari malformation – where the lower part of the brain slips out of the hole in the base of the skull and pushes down into the spinal canal.
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When head and neck pain became “severe and consistent” five years ago, Emily was repeatedly taken into A&E – where, eventually, doctors discovered the cause.
“I took it quite lightly at first – I was so relieved to have answers and didn’t know how severe it was or how much it would control my life,” Emily, from Devon, England, told Need To Know.
“I also didn’t realise at this point that there was no permanent cure and it is a chronic condition.
“Doctors explained to me that Chiari malformation causes the back part of the brain – the cerebellum – to partially slip out of the hole in the base of the skull and into the spinal canal.
“This is why I describe my brain as slipping or falling out.
“Due to my cerebellum slipping out, it is also pressing against the top of my spine and part of my skull – this is part of the reason it causes so much intense pain.”
For Emily, the worryingly normal early signs – headaches – first appeared in childhood.
She said: “I grew up healthy.
“I was very active and loved being outdoors.
“My first sign that something was wrong was around seven years old.
“When I would bounce on my trampoline, I noticed I was getting headaches after only just 10 minutes of playing on the trampoline.
“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.”
Her headaches continued throughout childhood but worsened when she turned 11, spreading to her neck and shoulder while she played netball and other sports.
She said: “I often complained about my pain, but my parents – along with me – just believed these were growing pains and or from playing too much netball.
“This pain then continued for the next few years and slowly worsened.
“As an attempt to relieve it, I tried visiting a chiropractor and an osteopath, however, this only seemed to increase my pain.
“In 2020, at 14, I started to get unbearable pain at the back of my head and neck, causing me to often miss school and events with my friends.
“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.”
Due to the severity of the symptoms, and how they interfered with her school and social life, Emily was taken to the GP, who suggested they go to A&E to find answers.
She claims she was often discharged with no answers, as blood tests and echocardiograms were showing no abnormalities.
Doctors initially believed she was suffering from migraines, but Emily insisted on further testing, and an MRI in October 2021 finally led to her diagnosis.
Treatment can vary depending on the case, but for Emily, this has involved brain and spinal surgery, which she underwent just two days after her 16th birthday.
She said: “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.
“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.”
After surgery, the pain was less severe and Emily felt less pressure in her head, giving her the chance to return to normality – going back to school and seeing friends.
But a year after the surgery, almost all of her symptoms returned, which doctors say was due to her having a tight filum – which pulled her brain down even lower.
In 2023, she found out she was eligible for a different form of surgery at a specialist institute in Barcelona and fundraised and used her savings to pay for the £17,000 treatment.
She underwent the filum terminale sectioning surgery in November 2024, where the surgeon cut a small, one-inch incision at the base of her spine, and cut her filum to release the tension.
Emily said: “Thankfully, this surgery has prevented my condition from worsening and has already started to improve my symptoms and pain.”
While she is on the up, the young woman says the condition has completely deterred her life.
She said: “It affects my daily life a lot.
“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.
“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.”
But despite the daily issues she still faces as a result of her incurable condition, Emily remains optimistic for the future.
She added: “I’ve been going swimming in a hydrotherapy pool once a week to help improve my symptoms and speed up my recovery, and have also been doing exercises and hope to start physio soon.
“I feel more able to go out with friends as often as possible.
“I hope to get back into learning to drive this year as this would really help with my independence.
“I feel like I’m finally catching up on everything I’ve missed which is a big relief for me.”
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