'I have brain aneurysms that could rupture at any time - I live in constant fear'
Former customer service worker Amber Ford, 31, from Hamilton, South Lanarkshire, says she was a 'healthy, outgoing' person before she began feeling unwell in 2018.
She was first diagnosed with mumps and Bell's palsy, a condition causing temporary weakness.
'My face was all twisted when I woke up one day,' she said.
Her condition took a turn for the worse in 2020 when she began experiencing excruciating headaches, nausea, mood swings and fatigue which was so severe she was falling asleep at work.
She was eventually forced to leave her job due to her condition.
Amber said: 'I wasn't able to stay awake. My behavior changed massively. I was lashing out and getting angry for no reason – completely out of character. I knew there was something wrong.
'The headaches I was getting were so bad that I was physically sick.' Amber Ford Amber was diagnosed with Bell's Palsy in 2018
Despite visits to her GP and a hospital, Amber felt she was not being taken seriously.
She was especially concerned about a lump in her throat which she believed to be cancer – but she said medics refused to refer her for further assessment.
'I kept being fobbed off. The doctors told me nothing was wrong, and they made me believe it was all in my head.
'One doctor even suggested psychiatric treatment because she said I was bringing the symptoms on myself, and medical opinions couldn't justify me getting a scan.
'That was the end for me. I realised I wasn't getting anywhere with the NHS, so I decided to go private.'
Through her work's private healthcare, she was able to seek a CT scan on her neck in December 2023.
But the scan instead revealed a shadow in her brain.
She was referred for a further MRI scan with the NHS in April 2024 which confirmed there could be up to three aneurysms sitting along a duplicated artery – a rare anatomical variation where a segment of a brain artery divides into two separate channels, which then rejoin distally.
'I was in total shock. I was convinced it was everything else going on other than that.
'When someone tells you it's something with your brain, it straight away becomes terrifying. Your brain makes you who you are.
'It's a really scary situation.' Amber Ford Amber says she wants surgery so she can 'get her life back'
A neurosurgeon suggested they could perform an angiogram to investigate further and surgery to cut off blood supply to the aneurysms; but these carry a high risk of complications due to her complex anatomy, which includes permanent disability or even death.
Amber is hoping to be seen by a brain surgeon with expertise in operating on duplicated arteries in the US, who has agreed to look at her case. She is aiming to raise £35,000 on GoFundMe.
'I'm part of an aneurysm support group with over 40,000 members, and I've only come across two people who have a duplicated artery with an aneurysm,' she added.
'I don't want to go to the US for surgery, but I'm in a situation where I really want to fight for a better outcome for myself. If there's any surgery that minimises my chances of disability or dying, I want to choose that option rather than the one being offered here, where they've never done it before.'
Amber says her aneurysms are growing 'significantly' and fears they could rupture at any time.
Amber also said the condition also runs in her family; her grandmother, Isobel O'Neill, died of a brain aneurysm at 56. Amber Ford Amber says she spends her life 'in edge and in constant fear'
'My whole life has completely been changed and put on hold,' Amber said.
'I live on the edge and in constant fear. The minute I go out, my anxiety goes through the roof. I have pain in my head, sore ears, and think, 'is this it? Am I going to die?' There are times when I lie down and I think I won't wake up.
'It doesn't make it easy knowing if something in your brain pops, it's going to kill you. That's no way to live.'
Amber said she is angry with doctors who dismissed her concerns and says her situation might have been different if she was listened to sooner.
'It's been a long process trying to find out what was wrong. I have been ignored for years and made to feel like a hypochondriac.
'If I had initially got that brain scan when I had Bell's palsy, we could have saved so much time and pain.
'I just want things to go back to normal. I want to go back to work, go out, and not worry that I'm going to die.
'I want a life. I want a family – so I need to get this surgery done.'
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