Leeds surgery for Wiltshire woman whose head was 'falling off'

Zoe Elliot, from Shrewton, raised more than £30,000 for the life-changing operation - not available on the NHS - by sharing her story across the globe via her Facebook page called 'Oh no, my head is falling off'.

On her worst days Zoe, 27, was unable to lift her head.

The surgery was to fuse her neck and head together - to avoid the risk of internal decapitation.

Zoe's health battle

Zoe has suffered with seizures since she was 15-years-old, and after private tests she was diagnosed with craniocervical instability (CCI).

The 27-year-old already knew she had ehlers-danlos syndromes (EDS) from an early age, which causes her frequent body dislocation and ligament failure.

But it wasn't until ten years later she received the private CCI diagnosis.

Doctors discovered that three parts of Zoe's neck are deteriorating and the area where her skull and spine meets is unstable.

On top of this Zoe has previously suffered with headaches, fainting and could not complete everyday tasks.

Operation breakthrough

In March of last year Zoe said the treatment she required would cost around £35,000.

After a year of fundraising and telling her story, Zoe had the life-changing surgery in Leeds this February.

"Some days I can't tell I've had an operation and some days I feel a bit stiff.

"The pain is so small compared to before which is amazing, and it will continue getting better in time," Zoe said.

As part of the procedure surgeons attached metal rods to the back of Zoe’s skull which were fused to the sagging vertebrae, holding them still and stopping them from touching the brain stem.

An X-Ray showing metal hardware in place

'It was such a weird thing but it worked'

Zoe added she was excited before the surgery but friends and family were nervous.

She said: "I was only worried the day before when I was in there on my own, because of Covid-19."

Describing what the surgery was like, Zoe said: "I was put in a long rubber band and weight was put on it until it felt better.

"It was such a weird thing but it worked.

"There was an issue cutting into me - my vertebrae was so rubber it had collapsed onto the brain stem so that had to be sorted too.

"That hadn't been picked up before."

Zoe in hospital, February 2021

'Oh no, my head is falling off'

To raise the thousands of pounds for the surgery, which Zoe said was unavailable through the NHS, Zoe took to social media to reach out for donations.

Her Facebook page is titled 'Oh no. My head is falling off'.

Both friends and strangers got involved, with money pouring in from as far away as America.

To date around £31,000 has been contributed by 186 donors.

"I was copying and pasting on social pages every day until I got blocked, and then I would make a new account and start again," Zoe said.

"Random people from America were donating money every month - it is amazing what people will give you.

"My happiness would rise so much on the days we made progress.

"I had a lot of people say to me they would do a charity-style fundraiser as soon as Covid-19 is over, but it's never really gone."

Visiting the doctor's surgery.

'I'm really proud'

Now on the road to recovery, Zoe said she can now do more "little things" independently, like dressing, washing, and wearing eyeliner.

Zoe's actions are still limited however, and she was instructed to continue exercises at home to strengthen the body.

"I feel quite good but I do worry about something happening if I turn my head and it collapses, but I am beginning to feel more normal," Zoe said.

"It's just so amazing I've had this operation because it took so much to convince people and my family something was wrong with me.

"I'm really proud I figured this all out for myself."

Get more Salisbury news and nominate your local heroes for the South Wiltshire Hero Awards.

You can also like our Facebook page and follow us on Twitter and Instagram to stay up to date.

If you want online news with fewer ads, unlimited access and reader rewards - plus a chance to support our local journalism - find out more about registering or a digital subscription.

Email newsdesk@salisburyjournal.co.uk with your comments, pictures, letters and news stories.