One day in March 2018, Sarah Harris, 23, woke up with a terrible backache.
Starting in her lower back, it spread to her shoulders, neck and arms to the point she couldn’t move because she was in so much pain.
Just weeks later, she was in hospital for a month and had lost 90% of her eyesight.
Sarah, a student from Nottingham, had taken a few days off from university to visit her family as her grandad had passed away. She was meant to go back, but had to extend her visit because she couldn’t move at all.
‘It all happened so fast,’ Sarah tells Metro.co.uk. ‘I was in bed all day, not doing anything for two weeks. I couldn’t eat or talk because it was so severe. I was taking painkillers as strong as Tramadol, but it wasn’t helping at all.
‘Two days after it started I went to my GP. Everyone had told me I had just pulled a muscle because I had slept on the floor that weekend when I went to see my cousins.’
Sarah was given an emergency physiotherapy appointment and was seen that same week. They assumed it was ‘just muscular pain’, because at the time that was her main symptom, and she was given some basic shoulder and back exercises.
But then Sarah started experiencing severe headaches and her vision became blurry.
‘I was dizzy constantly and just assumed that was why my eyesight seemed a bit blurry,’ she explains. ‘I remember first noticing my eyesight issues when I brushed my teeth.
‘Everything was so cloudy, but I didn’t think much of it.’
Physiotherapy didn’t help with her back pain at all. In fact, it just kept getting worse – and was now paired with unbearable headaches, too.
‘It would be like someone was literally squeezing my brain,’ Sarah says.
‘I also had nausea, tingling all down my left side of my body, a whooshing sound in my ears and blurry vision. All of these symptoms were constant.’
A week after her physiotherapy sessions ended, Sarah went back to her doctor, who said it seemed like she was experiencing migraines. He referred her for an emergency MRI, which was two days later.
‘He could physically see how ill I looked,’ says said Sarah. ‘I remember him specifically saying to my mum that “something just doesn’t look right”. Given my grandfather had just passed and I was also a few weeks away from exams, he told me not to stress too much.’
The MRI showed ‘nothing at all’, leaving Sarah suffering ‘unbearable’ pain with no explanation.
‘I genuinely thought I was going to die,’ she says.
‘I didn’t even feel like going to the doctors because it took too much energy. All I could do was lie in bed in the exact same position. My eyesight was getting really bad. Everything was really blurry. I had double vision constantly.
‘I couldn’t go anywhere myself and had to have someone guide me when I went out.
‘My mum was doing everything for me, from helping me to get dressed to feeding me. I was even sleeping with her at night in case something happened.
‘Mentally, I was just exhausted. I felt numb and like this would never end.’
It wasn’t until Sarah’s dad, who is a plastic surgeon, noticed that her eyes were bulging that Sarah was taken to a walk-in-centre.
She waited five hours in agonising pain to see a doctor, and when she finally did, it was agreed that something didn’t look right.
The doctor called the on-call neurologist at the local hospital, and Sarah was told it could be possible that she had had a stroke – but due to it being a Bank Holiday, he wouldn’t be able to see her until Tuesday. That was three days away.
‘Those three days were the worst of them all,’ says Sarah.
‘The pain was so bad that I couldn’t even sleep. I began hallucinating in the end. I was seeing and having whole conversations with people who weren’t in the room. I genuinely prepared myself for death, because I felt like I had come to the end.
‘I even mustered up some energy to sit with my family because I just had a feeling that I was about to go any minute. It was unbearable but I had to make my piece with it.’
On the Monday, a day before she was meant to see the neurologist, Sarah had a routine appointment booked with her optician that she had forgotten to cancel. She wasn’t up to going but her dad convinced her to.
They told the optician what was going on, and some pictures of the back of Sarah’s eye were taken.
These revealed the truth: Sarah had a condition called idiopathic intracranial hypertension, where there is such a build up of cerebrospinal fluid in the head that it puts severe pressure on the brain.
‘You could hear the shock in his voice when the pictures loaded,’ says Sarah. ‘I didn’t really understand what he meant, but he even called the other staff members into the room to show them.
‘He said that if I didn’t go to the doctor straight away, I could risk going permanently blind.
‘He even said: “If you weren’t just about to go there, I would be calling you an ambulance to take you to hospital”.
‘When I finally went to the hospital and met with the neurologist, he ran some basic exams and everything seemed off – especially my coordination.
‘He didn’t tell my mum anything other than that he was admitting me and that someone would be in to take me for a lumbar puncture in a few minutes. He started talking to my dad in complicated medical dialect and said he had never seen anything like this.
‘The lumbar puncture took around 30 minutes and my pressure was 55+ – when it’s meant to be between 10 to 20. He said that in his 30 years of practicing, he’d never seen a pressure so high.
‘But it almost instantly relieved my headache pain.’
Sarah was kept in the hospital for a month and had 10 lumbar punctures. But because the fluid kept building back up even after it was drained, the doctors gave her surgery for a shunt, which would permanently drain the fluid.
Sarah says: ‘I was hesitant at first because it can cause problems, but having a lumbar puncture every few days didn’t seem feasible and I wanted to return back to normality, so I finally agreed. It basically drains the fluid from my head, down into my spine and into my blood.
‘It’s basically like a plumbing system for my body. I’ve had it for two-and-a-half years now and although it does cause the occasional backache, it’s been helpful. I just have to be careful not to do anything clumsy or it can break.
‘My vision took almost a month to become clear again. In the hospital, I was having lumbar punctures every two to three days. Other than a little permanent damage, my eyesight went almost completely back to normal.
‘Being in hospital was depressing. I only lived across the road and it felt strange being so close to home but not being able to visit. I was the youngest person on the ward, so it was strange. But my family and friends were always visiting which was nice.’
Since Sarah has had the shunt, everything has been okay – but she does get the occasional headache.
Though her condition is chronic, Sarah’s neurologist believes she could be on the road to remission.
Sarah’s university allowed her to take a year out to complete her coursework from home, and she has been living with her family.
‘I’m grateful to my optician because he’s been so helpful even after,’ she says. ‘He even wrote a blog post about me in his ophthalmology community which supposedly went viral so he somewhat treats me like a celebrity, which is cute.’
Sarah doesn’t feel any anger towards the medical professionals who were unable to diagnose her.
After months of not knowing what was wrong, she’s grateful to finally have answers.
‘It was such a hard illness to diagnose,’ she tells us. ‘I think my doctors tried their best.
‘I’m with the same doctors at the moment. I don’t necessarily blame my GP because I think he tried his best.
‘While I was in hospital, he would call my mum every day to check in on me. He was extremely apologetic that he missed it, but I don’t blame him whatsoever. He’s great with me now and always takes me seriously.
‘Things could be so much worse so I’m grateful to be where I am. When I was in hospital, my doctors said going back to uni and having a normal life may never be possible, but I proved to them it was.
‘My neurologist says we can consider taking the shunt out in a few years but we’ll keep it in for now to be on the safe side.
‘I don’t think life will ever be completely normal because I have to be so cautious and everything basically revolves around doctors’ appointments, but I constantly count my blessings.’
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