A young mum has undergone major surgery for a rare condition – where her brain is too big for her skull and the internal pressure up to FIFTY times that of normal.
Hairdresser Lucy Phillips, 29, was suffering from headaches and tiredness but put it down to overworking at her new salon.
Doctors thought she had sciatica or possibly MS and prescribed drugs but her condition started to deteriorate.
The mum-of-two said she started to feel like spiders were running over her and after eight months of tests, she was diagnosed with a rare condition – Chiari malformation.
It causes the lower part of the brain to push down into the spinal canal.
Lucy underwent seven hour surgery to remove muscles under her brain which allowed it to sit up further instead of pushing down on her spine.
But she began to get a build up of spinal fluid which meant she needed further operations and investigations to relieve the pressure.
When she moved her head the pressure was thirty to fifty times higher than a normal person’s.
Earlier this year she had a hole drilled into the top of her skull and a wire threaded into her brain to monitor the pressure pending further operations.
Lucy said: “Doctors thought I had MS after the scans as I had similar symptoms.
“It got worse and worse, I had tiredness, it felt like someone was stabbing me and as if spiders were running over me.
“There was constant ringing in my ears and I always had a thumping headache.
“No one had answers; I was scared and wouldn’t let my children see me poorly – I wouldn’t want them to remember me in that state.
“Then a neurologist said they were confident I didn’t have MS but no one really knew much about Chiara malformation.
“My GP gave me a leaflet and told me the signs and symptoms of the condition would go away within a few weeks.
“My nerve endings were being blocked because the tonsils of my brain were pushing into my spinal chord which gave me intense pressure behind my eyes and in my head.”
Lucy, from Plymouth, Devon was told the condition formed in the womb and type one Chiari malformation symptoms don’t normally show until late teens up to 30s.
She added: “A lot of things make sense now – when I was a teen in the Navy I would have back spasms and couldn’t move, but I never got my head scanned.
“During both of my pregnancies I was poorly but no one knew what was wrong.
“It [Chiari malformation] can be passed down – it is a bit of a concern. Oscar has had a scan but has no signs yet and doctors are pretty confident he doesn’t have it.
“It does affect our home life and the children ask why I’m always poorly.
“My body wont let me do little things anymore and I can’t function in the mornings – I get up super early so I can at least say morning to them.”
She now wants to raise awareness for the rare condition.
Together with her staff at her salon she has raised over £1,200 for the Ann Conroy Trust which helps those living with the brain malformation.