Docs had to screw my head back on!
A risky op was the only way to get my life back Zoe Elliott, 28, Salisbury
Staring at the scan screen, I could see my skull wobbling back and forth. Like a bobblehead doll. ‘You have cranio-cervical instability (CCI),’ the doctor told me.
My vertebrae and muscles weren’t strong enough to hold my head up properly.
One wrong move could sever my spinal cord.
Leaving me internally decapitated!
‘I’m sorry,’ the doctor said as I burst out crying.
Only, believe it or not, they were actually tears of happiness.
Yes, it was a terrifying diagnosis.
‘But I’m just relieved to have answers,’ I blubbed.
It was March 2020, and I’d been suffering for decades.
It’d started in the school playground at 7...
I was always tripping up. My legs would give way, I’d dislocate a knee or ankle.
My joints were hyperflexible, meaning the range of movement was more than that of the average person.
Yet doctors had no answers. By 14, I was often fainting at school.
I’d come around to find bullies had smeared food in my hair.
‘I hate school,’ I told my mum, Lisa, then 48.
Tests showed that I had postural tachycardia syndrome (PoTS).
It meant my heart rate rocketed abnormally if I sat or stood too long.
There was no cure, and by 16 the fainting turned to seizures.
At college, I’d run to the loo if I felt one coming on.
At the weekend, I’d stay home.
Eventually, I was diagnosed with epilepsy, given more medication.
Depressed and angry, I struggled.
I wanted to study Psychology, become a counsellor.
But with my health deteriorating, it was a distant dream.
My joints dislocated more often, pain soared through my neck, I had constant headaches, my face always tingling with pins and needles.
For years, I was too weak to work.
Even simple chores were difficult, and I spent most days in bed, sitting up with a fort of pillows.
In 2018, I was diagnosed with Ehlers-Danlos syndrome (EDS).
It’s a rare condition affecting connective tissue, impacting my skin, tendons, ligaments, blood vessels, bones and internal organs.
I joined online support groups for EDS sufferers, which helped me to learn a bit more.
Gave me hope.
What can I do about the neck pain and pins and needles? I asked one day.
Then a private message popped up from another member.
Sounds like CCI, they’d said to me.
Researching, I’d been shocked to read
I had most of the CCI symptoms.
So I booked a private test and scan.
And now, at long last, it’d finally unearthed the precarious condition of my skull, teetering at the top of my spine.
The specialist explained that it was caused by EDS.
A life-changing op to fuse my neck with metal plates could give me a chance of a normal life.
‘But it’s not available on the NHS,’ he said.
I would have to fork out an eye-watering £35,000 myself.
‘I need this surgery,’ I told Mum.
It was risky, could potentially leave me paralysed, or dead.
But I longed to live life, so with Mum’s support, in March 2020, I set up a GoFundMe page.
I spent the next year sharing the link on social media, explaining my story.
Staying at home, too afraid to move my neck in case I decapitated myself.
People were so very
The surgery could leave me paralysed, or dead
generous, though – strangers worldwide were amazing, including a kind couple from Scotland called Jim and Christine Dillon, who helped keep my spirits up.
By February 2021, I reached £25,000, and Mum’s best friend, my honorary uncle Simon, 64, helped with the last £10,000.
‘You don’t know how much this means,’ I wept.
I had the op that same month.
Arriving at Nuffield Health Leeds Hospital the night before surgery, scheduled for 6.30am the following morning, I was scared, but mostly excited for all the possibilities ahead of me if it worked.
Several hours later, I slowly came round in Recovery, dosed up on pain medication.
I don’t have a screaming headache!
I realised. Does this mean it’s worked?
I couldn’t have visitors because of COVID-19. But as I became more lucid, surgeons explained that they’d stabilised my spine, fusing my neck to the base of my skull using metal rods. The rods, and a wire cage around my vertebrae, would stop my spine from touching my brain stem. Four days later, I walked out of hospital in a pair of blue heels, feeling great!
I had a vertical scar up my back, and my head was shaved at the back.
But I was ready to start my life.
I’m still recovering, rebuilding my strength.
I do morning stretches, yoga to loosen my muscles.
Online physio due to lockdown wasn’t easy, so I learnt exercises through books.
But I’m already less fatigued, my balance and coordination have improved, the headaches gone.
And I can walk more easily, too.
Before, I could turn my neck like something from The Exorcist.
Now, I have a normal range of movement.
The X-ray of my skull looks amazing, with all the metalwork inside my neck. From the outside, you’d never guess, but I’ve literally had my head screwed on!
I’m still taking things slowly, but I don’t live in fear anymore.
I missed almost all of my 20s, so plan to see them out in style.
And then, in my 30s, well, anything is possible!
I walked out of hospital in a pair of blue heels!