This brave mum is having surgery because her skull is too small for her brain
By
CturnerHerald | Posted: February 22, 2017
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Lucy Phillips was just 26 years old when she was told she had a rare condition which means her brain is too big for her skull.
Over the past two years, she has undergone several surgeries in the hope of relieving the excruciating pressure building up in the base of her brain and spine, but nothing has yet worked.
The now 29-year-old is hoping to raise awareness of her condition, Chiari malformation, which is where the lower part of the brain pushes down into the spinal canal putting pressure on the brainstem, spinal cord, and obstructing the flow of fluid.
Lucy began getting shooting pains in her body and became increasingly tired – she had thought she was overworked having just opened her own salon, Purity, in Plympton.
Doctors put it down to sciatica and gave her a prescription for diazepam, but she began deteriorating and was sent for an MRI scan.
The mum of two 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.
"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."
It took eight months for specialists to find out what was happening to Lucy, and she was finally put into the care of Mr Hayden, the consultant neurologist at Derriford Hospital.
"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," the young business owner added.
Lucy's first surgery was decompression where the back of her skull was opened – surgeons removed the muscles under neath her brain and chiselled a 50p piece out of her skull to allow for her brain to sit further up rather than pushing down on her spine.
After the seven hour procedure, Lucy stayed in hospital for a week with a drip in the back of her brain.
She had thought the major surgery had worked – but she began to get a build up of spinal fluid, meaning she would need further operations and investigations to relieve the pressure.
Lucy then had three lumbar punctures at the base of her spine to drain the excess fluid, but they were unsuccessful.
The Plympton resident was re-admitted to Derriford for a two day inter cranial test on February 19. Lucy had a hole drilled into the top of her skull and a wire threaded into her brain to monitor the pressure, which was thirty to fifty times higher than a regular person's when she moved her head.
Lucy was told the condition would have formed she was a foetus, and that type one Chiari malformation symptoms don't usually show until late teens up to 30s.
Lucy said: "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 with Oscar and Charles 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."
Lucy will find out on March 1 when her next surgery will be; she is due to have an invasive lumbar– peritoneal shunt where a tube will be inserted behind her ear, fed down her spinal chord and into her stomach.
Consultants hope this will finally relieve the pressure in Lucy's brain long term – but it will take her between three and six months to recover from the major op.
Now, the brave mum of two is hoping to raise awareness of the rare condition and has urged people to carry on and not give up in finding the right help.
Lucy praises the Ann Conroy Trust for helping her through her diagnoses – they were there to answer her phone calls, explain medical terms from hospital letters and give guidance about the condition which she hadn't been able to find elsewhere.
Lucy and staff at her salon in Ridgeway raised over £1,200 for the charity who put the funds back into helping those living with the brain malformation.
Lucy says the support she has received from friends and family has been amazing, and has thanked the girls at her salon for keeping it open in her absence.
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