A teenage girl who staggered around ‘like she was drunk’ actually needed surgery because her brain was slipping into her spinal cord.
Erin Orlopp’s family first realised something was wrong when she became unable to walk in a straight line, developed a swollen cheek and suffered jaw pain.
The 15-year-old, of Bolton, was finally diagnosed with chiari malformation after months of tests.
This occurs when the brain tissue extends into the spinal canal, which can cause permanent damage or even death.
The teenager was forced to undergo surgery to remove a section of her skull last October.
Although this has eased her symptoms by allowing her brain more room, Erin still suffers considerable dizziness and visual disturbances.
Erin Orlopp (left) – who staggered around ‘like she was drunk’ – actually had her brain ‘slipping into her spinal cord’. The 15-year-old was forced to undergo surgery to remove a section of her skull in order to make more space. She is pictured right with her mother Alison in hospital
Speaking of Erin’s symptoms, her mother Alison said: ‘She was acting almost like she was drunk.
‘She was staggering about and had visual disturbances, so we knew something was wrong.’
The teenager was transferred to Royal Manchester Children’s Hospital, where she underwent MRI scans on her brain, neck and spine.
Results revealed Erin was suffering from both chiari malformation and basilar invagination, which occurs when the top of the spinal cord moves up.
Writing on her JustGiving page, the teenager said: ‘Due to the severity of my symptoms I was told I needed surgery to reduce the headaches, constant dizziness, clumsiness, pain in my entire head and neck, and visual disturbances.
‘[It was] like being drunk all the time (so I’m told as I wouldn’t know what that was like!).
‘In a nutshell this was caused by my brain falling out of the bottom of my skull and crushing my spinal cord, this restricted the flow of spinal fluid.’
Doctors explained the operation would involve removing the lower part of Erin’s skull in order to relieve the pressure on her spinal cord.
‘I was really, really scared when I knew I had to have the operation,’ Erin said. ‘The only medical procedure I’d ever had was treatment for an ingrowing toenail’
‘At first I thought “why has this happened to me?” but after a week I just told myself I might as well not worry about it.
‘It’s going to happen so what’s the point in worrying and complaining?’
Although hugely concerned for her daughter’s wellbeing, Alison noticed an improvement as soon as Erin woke up from surgery.
‘I was obviously worried sick the whole time, but as soon as she woke up she said “mum, I’m not dizzy anymore” and I realised what she’d been going through,’ Alison said.
Erin added: ‘I recovered really well and have a pretty impressive scar on the back of my head!’
Despite surgery, Erin (pictured with her mother and father Garry) still endures dizziness and visual disturbances. This is due to her having basilar invagination, which occurs when the top of the spinal cord moves up. Doctors warn she will likely require further operations
Although the surgery helped fix Erin’s chiari malformation, the teenager still suffers from basilar invagination.
This also causes pressure on her brain stem, and means some of her dizziness and vision problems remain.
Doctors have explained Erin has ‘cranial instability’ and will likely have to go under the knife again at some stage.
‘One of the hardest things we face is knowing she can’t do some of things she always enjoyed doing before,’ Alison said.
‘We used to go to Alton Towers every year as a family, she loves rollercoasters, but things like that are out of the question now.
‘She can’t do contact sports and she can’t do trampolining either, which she also used to enjoy. She went skiing and really wanted to go again but she can’t.’
Erin is also unable to even wear headphones due to the risk they may make her dizzy. And she has to be careful not to lift anything that is too heavy.
‘There are a lot of things that have changed for her, and she’s getting to know her limits,’ Alison said. ‘But most of the time she just shrugs it off – she stays positive.’
Pictured left with a friend, Erin’s parents worry her ‘cranial instability’ will make her miss out on things she enjoys, such as riding roller coasters. Despite her health challenges, Erin (pictured right with her mother) scaled Snowdon to raise money for the hospital that treated her
Despite her ongoing health challenges, Erin is back at school.
And over the weekend she scaled Snowdon to raise money for the iMRI Scanner Appeal at at Royal Manchester Children’s Hospital.
‘All the help I’ve received at the hospital has been amazing,’ Erin said. ‘So I wanted to do the climb for all the children who aren’t able to it.
‘Seeing other children in the hospital really made me want to do some fundraising, then mum mentioned about Snowdon and it sounded like a really good idea.
‘I wanted a challenge.’
Erin – who took on the hike with Alison, her father Garry and a team of friends – have already raised more than £1,600.
Speaking of the challenge, Alison said: ‘We were all absolutely shattered. It was hard work but Erin did amazing.
‘To say I’m proud of her is an understatement.’
Sarah Naismith, director of Royal Manchester Children’s Hospital Charity, added: ‘Erin has faced a lot of challenges with her health, so the fact she took on a new challenge – her Snowdon climb – is truly humbling to see.’
Donate to the cause here.
WHAT IS CHIARI MALFORMATION?
Chiari malformation occurs when the brain tissue extends into the spinal canal. This can happen if the skull is abnormally small or misshapen, which presses the brain downwards.
The Brain & Spine Foundation in the UK and the National Institute of Neurological Disorders and Stroke in the US both estimate one in every 1,000 people are born with the condition.
It may actually be more common due to not all sufferers developing symptoms.
There are three types of chiari malformation:
Type I – occurs as the skull and brain are growing. Symptoms usually appear in late childhood or early adulthood and include neck pain, poor balance, co-ordination difficulties, numbness, dizziness and impaired vision
Type II – is present at birth and related to spina bifida. Occurs when more of the brain tissue extends into the spinal cord than in Type I. Symptoms may include changes in breathing patterns, swallowing problems, arm weakness and quick downward eye movements
Type III – is present at birth and the rarest form of chiari malformation. Occurs when a portion of the lower part of the brain extends through an abnormal opening in the back of the skull. Has a high mortality rate and can cause brain damage
Although not usually considered life-threatening, chiari malformation may be fatal if a patient’s breathing or swallowing is affected.
It can also lead to hydrocephalus – the build-up of cerebral spinal fluid in the brain – which can be deadly if untreated.
Treatment may not be necessary if symptoms are mild with just regular check-ups and MRI scans being required.
However, surgery can be carried out to remove a small section of bone at the back of the skull. This relieves pressure by giving the brain more room.
The procedure runs the risk of infections, fluid in the brain and spinal cord leaking. Although the operation helps to relieve symptoms it cannot cure nerve damage that has already occurred.
Source: Mayo Clinic