‘Healthy’ woman, 31, held prisoner in her own body as ‘shadows’ on her brain could burst at any moment
“AM I going to die today?” It’s a question Amber Ford asks herself daily.
For the 31-year-old is living with multiple brain aneurysms that could rupture at any moment.
The situation has left her feeling like a “prisoner” in her own body.
“This has completely taken over my whole life,” Amber says.
“I don’t even leave the house because I start having panic attacks.”
Amber, from South Lanarkshire, Scotland, described herself as a “healthy” person before she became unwell in 2018.
She was first diagnosed with mumps and Bell’s palsy, a condition causing temporary weakness.
“I woke up one day and my face was all twisted,” she says.
“Since then, things haven’t been right – my bloods have been off, I’m always catching infections, things like that.”
And her health “hasn’t been right” ever since.
In 2020, she started experiencing concerning symptoms such as extreme fatigue, bad headaches, disturbances to her vision and waking up “choking” on her own vomit.
“I was falling asleep at work, I was falling asleep standing up,” Amber says.
“I started having bad headaches to the point I couldn’t lift my head and the light in the room was too much.
“I was being sick in my sleep and I was waking up choking, I couldn’t breathe.”
She also experienced “disturbances” to her vision, loss of function in her legs while laughing, and “out-of-character” changes to her behaviour.
After raising these issues with a GP and a hospital, both of which she did not wish to name because of ongoing treatment in their care, the former customer service worker felt she was not being taken seriously.
“I knew there was something wrong with me for a long time but I was being told that I was bringing these issues on myself or I needed psychiatric treatment,” Amber says.
Through her work’s private healthcare, she was able to seek a CT scan on her neck in December 2023.
Initially “convinced” she may have throat cancer due to a lump in that area, it instead revealed a “shadow” in her brain.
I feel like I’m a prisoner in this situation and it seems no matter what option I choose, the outcome just isn’t good
Amber Ford
A neurosurgeon suggested she could have something called a fenestration, where a single artery is split into two.
An MRI scan in April 2024 then confirmed up to three aneurysms, or bulges in blood vessels.
However, a procedure to investigate further could cause serious complications, such as a stroke.
Amber is now faced with the prospect of a risky surgery to cut off blood supply to the aneurysms, which could cause a haemorrhage, leave her permanently disabled, or dead, or she could “do nothing”, knowing they could rupture at any time.
“I’m basically living in unbearable anxiety every day thinking, ‘Are they going to rupture today?’ and ‘Am I going to die today?’,” Amber says.
“If I get the surgery, there’s a chance I could have a stroke, a haemorrhage, I could be left permanently disabled or dead.
“If they did rupture and I survived, it could mean I might never walk again, I might be blind, I might never speak.
“I feel like I’m a prisoner in this situation and it seems no matter what option I choose, the outcome just isn’t good.”
Unfortunately, the condition may run in Amber’s family – her grandmother, Isobel O’Neill, died at the age of 56 from a brain aneurysm.
Amber says there is “no way of knowing” the extent of her situation without undergoing an angiography, a type of X-ray where a thin tube is inserted into an artery – but there is a risk she could have a stroke with the procedure.
She also says the fenestration in her brain is “not dangerous” but because her aneurysms are situated on this artery, her condition has become all the more rare and risky.
Amber is now faced with two options – an operation to place a metal coil on the artery to cut off blood supply to the aneurysms, which comes with great risks, or watch and wait.
She says she has found an American doctor who deals with complex aneurysm cases and who worked with patients with similar conditions to hers, saying they have agreed to look further into her case.
But she doesn’t have the money to pay for such a trip, so she has launched a GoFundMe.
“I genuinely just want my life back,” she says. “I want to have a family and enjoy my life.”
What is a brain aneurysm?
A BRAIN aneurysm is a bulge in a blood vessel caused by weakness in the blood vessel wall, usually where in branches.
As blood passes through the weakened blood vessel, the blood pressure causes a small area to grow outwards like a balloon.
Most brain aneurysms only cause noticeable symptoms if they burst, also known as rupturing.
This leads to an extremely serious condition known as a subarachnoid haemorrhage, where bleeding can cause extensive brain damage and symptoms.
The most common symptoms of a ruptured brain aneurysm include:
- A sudden agonising headache (described by some as a ‘thunderclap’, similar to being hit on the head resulting in blinding pain)
- A stiff neck
- Sickness and vomiting
- Sensitivity to light
- Blurred or double vision
- Sudden confusion
- Loss of consciousness
- Seizures
- Weakness on one side of the body or in any limbs
A brain aneurysm that has burst is a medical emergency and you must call 999 immediately.
Doctors aren’t sure exactly what causes them, but they are more likely in people who are over the age of 40, who smoke, have high blood pressure or a family history of aneurysms.
Experts believe as many as one in 20 people are affected by brain aneurysms, but only one in 15,000 experience a rupture each year.
Between 25 and 40 per cent of those affected die within 24 hours, it is estimated.
Source: NHS and the London Clinic