A WOMAN is living with a fake brain tumour that has left her bed bound and losing her eyesight.
Kim Slater’s brain mimics symptoms of a tumour, suffering headaches, dizziness and fatigue, and is at risk of going blind.
The 30-year-old was told she suffers with a rare condition called idiopathic intracranial hypertension (IIH) in December 2019.
The condition occurs when high pressure around the brain causes tumour-like symptoms, but there is no mass seen on scans.
IIH is believed to affect one in 100,000 people, has no known cause and no cure – leaving Kim feeling hopeless.
She has been told to lose weight, given the condition is typically seen in women in their 20s and 30s who are overweight.
However, having suffered an eating disorder in the past, Kim is reluctant to restrict her diet and says she would rather lose her eyesight than her mental health.
Although she has been prescribed pain medication for the agony she is in every day, in the last month it has stopped working.
Kim, from Bristol, got her diagnosis six months after her symptoms began.
She went back and forth to her GP who was “totally confused” by the “huge list” of problems she reported.
Kim said: “When I was diagnosed, I was at my worst – I had migraine-like headaches every day which left me dizzy, nauseous and emotionally drained.
“The pain was exhausting and I often got confused, couldn’t speak properly and would forget things because of brain fog.
“My boyfriend Liam moved in and did almost everything for me, from cooking to cleaning, to even helping me to the bathroom on particularly bad days.”
Fears of true brain tumour
Kim’s GP told her to see her optician in November 2019 when it was clear there were changes in her vision, including blackouts.
She was referred to the eye hospital for tests and went the following day, accompanied by mum Liz, who previously worked as a nurse.
Kim panicked at the thought she may have a deadly tumour with all signs pointing towards it.
She said: “My mum and I started the walk up to the hospital in silence until I broke it and said ‘they’re looking for a brain tumour aren’t they?’.
“My mum is a straight-talking lady so answered truthfully that yes, they were but we would deal with whatever happened.”
While they waited for the results, she and her mum used “dark humour” to get through the terrifying ordeal – joking about the young woman’s funeral.
When Kim was told she didn’t have a brain tumour, but potentially had IHH, she says she felt relieved but also deflated.
“I still didn’t have a real answer and in my 10 minutes of research about IIH on the drive home I realised the outcome didn’t look great,” she said.
“Academically, there were hardly any papers referencing it and all the anecdotal stories seemed to be tragedies about people losing their eyesight or living in pain forever.
“I even had moments over the following months when I wished it was a tumour that I could cut out and throw away to get on with my life.
“A tumour felt easy to understand, for me and everyone else around me.
“This just felt messy and I didn’t know what it would mean for my future.”
Following an MRI and lumbar puncture, which measures the force of fluid coming out and helps determine pressure levels, Kim was given her official diagnosis.
Intracranial hypertension can be the result of a head injury, stroke or brain abscess.
But in Kim’s case, it is “idiopathic”, meaning there is not a known cause.
The condition usually affects young women with links to being overweight, hormone problems, medications and the Pill, the NHS says.
A doctor explained to Kim there is a link between obesity and IIH – urging her to lose weight to aid her recovery.
But Kim does not want to face being thrown into the depths of an eating disorder she recovered from previously.
She was also told there are limited options for her condition, and she may be facing a “worst case scenario” procedure of having a shunt drain the fluid from her brain to her stomach.
But Kim fears she won’t be able to get the treatment because she hasn’t lost weight.
‘I worry everyday’
At the same time, her vision is getting worse. Between five and 20 per cent of people with IHH go blind.
Kim said: “I still have to fight that voice telling me it’s my own fault and if I was skinny I’d be OK.
“I worry about my eyesight every day but I feel like I’m stuck choosing between that or my mental health.
“The whole experience has left me incredibly cynical about the medical industry and the weight stigma that I’ve had to go through.
“I would rather end up blind than be pushed into suicide by my eating disorder.
“Along with the risk of blindness, my chances of a stroke, brain aneurysm, or cardiac event are also increased.”
Kim has been trying to get on with the condition with family members and her partner, Liam, stepping in to help look after her.
Liam became her carer when she had to put her career goals on hold after graduating from university.
Kim rarely sees her friends and spends most weekends in bed.
Intracranial hypertension: the facts
Intracrainial hypertension (IH) is the build-up of pressure around the brain.
Acute IH can be caused by stroke, injury or a brain abcess.
Chronic IH, when the symptoms are long-lasting, is rare. It’s often unclear why it happens, called idiopathic IH.
Idiopathic IH mainly affects women in their 20s/30s and has been associated with:
- Being overweight
- Hormone problems
- Certain medicines – normally antibiotics, steroids or the combined contraceptive pill
- A lack of or too many red blood cells
- Chronic kidney disease
But these are only links, not necessarily causes.
- A constant, throbbing headache
- Temporary loss of vision
- Feeling/being sick
- Feeling sleepy
- Feeling irritable
Luckily, Kim has now found a neuro ophthalmologist and GP who are more considerate of her history, and who treat her without mentioning her weight.
Kim said: “Through years of therapy I have realised that, while some things you can change, you might as well get on board with the things you can’t and learnt to accept things the way they are.
“But [I wonder] how will I relate to the world if I do lose my eyesight? Will I lose my independence? Will I feel even more isolated?
“I’m scared of going blind but mostly because I don’t know how I will function.
“I’m learning to live with it and get support from the IIH community online.”