£75,000 To Laugh Again
Angela’s painful brain condition is no joke
Angela Chapman, 39, Glenrothes
As my husband Matthew placed his hands on my belly, I felt two little feet kick into action. Magical.
My two lads Joshua, 19, and Aaron, 10, from a previous relationship, were growing up so fast. I couldn’t wait to cradle a baby in my arms again.
On 15 January 2014, Jacob was born, weighing 8lb 5oz. Adorable.
But, later, while I was still on the ward, a searing pain exploded in my temples. ‘My head’s so sore,’ I told a nurse.
Crushing feeling
She assured me it was simply because of the position in which I’d given birth – on my knees on the bed, my head pushed into a pillow. So I tried to forget about it. A headache would pass... But, a week on, back home, as I changed Jacob’s nappy, the agony struck again.
I’d suffered migraines before, but this was different – a dull, crushing feeling that wouldn’t ease.
‘Go and see the GP,’ Matthew, 21, urged me.
At the surgery, I explained my discomfort.
‘Sounds like a tension headache, probably caused by your birthing position,’ the doctor said, prescribing me some painkillers.
Only, they didn’t help. It felt like my brain was on fire.
It was worse when I was standing or bending down – what new mums spend most of their time doing!
Back and forth to the GP, no-one had an answer.
Then, one day, as I played with Jacob, a different sort of feeling filled my head. Agony from the base of my skull, down my neck, making it stiff.
An immense, dull pain at the back of my head, like I’d been karate-chopped.
I was referred for an MRI scan and, in May 2015, I went to Victoria Hospital in Kirkcaldy. But, next day, my phone rang. ‘There’s a mass on your brain,’ the neurologist explained.
‘A brain tumour?’ I blurted, feeling sick.
‘No,’ he replied. ‘It’s a rare condition called spontaneous, intracranial hypotension.’
Back at hospital, the neurologist explained SIH is caused by a leak of cerebrospinal fluid.
‘Basically, there’s a hole in your brain, and the fluid around it has gradually seeped out,’ the neurologist continued.
Incredibly rare, it affects just 1,000 people in the UK.
It causes the skull to drop and the brain to slump, triggering severe pain. The hole may have always been there, but it was likely made worse during labour with Jacob.
‘It’ll be OK,’ Matthew reassured me.
Then, given more painkillers, I was also booked in for blood patching, where they’d numb the lumbar part of my spine and inject blood to clot over the leak and repair the hole.
In October 2015, I had my first session.
Car smash
After the second round, in December 2015, I started to feel better. The pain easing, I weaned myself off the meds. Things were on the up. But, while driving on
4 July last year, I stopped at a roundabout, Matthew in the passenger seat, Jacob gurgling away in
It feels as if someone’s trying to rip my brain out
the back.
Checking my wing mirror, I saw a car speeding towards us.
‘Matthew, I don’t think he’s going to stop,’ I panicked.
But there was nothing we could do. Within seconds, the car hurtled into the back of us. The impact threw my head and neck forward, smashing it back into the headrest.
My first thoughts were for Jacob, though. Harnessed into his seat, thankfully, he was fine. Miraculously, we all were. Until, a few weeks later, the familiar, unbearable brain pain returned.
My neurologist referred me to Edinburgh Hospital, but I was refused more blood patching, due to the risk of brain abscesses.
‘It’s the only thing that worked,’ I pleaded.
But they wouldn’t budge. So, prescribed bed rest and more painkillers, I found myself back at square one.
Then, in June this year, I had an intracranial pressure (ICP) device inserted into my head to monitor the pressure in my brain, so medics could see how dangerous it could be if it increased too much.
The only potential cure is invasive surgery with a specialist in the US, where they’d need to take away a part of my skull. And it’s pricey, costing more than £75,000.
But it’s my only hope, as SIH is affecting my short-term memory, too.
Matthew and the boys compare me to the forgetful fish Dory from Finding Nemo.
‘You told me that yesterday,’ Matthew tells me constantly.
But worse than the pain and forgetfulness is that it hurts to laugh. Imagine that!
I have to suck my cheeks in when the boys make me giggle. Heartbreaking. Shouting, talking loudly, sneezing and coughing are all unbearable, too. It feels as if someone’s pulling on the base of my spine, trying to rip my brain from my skull.
Raising funds
I’m not the only one with this condition. Hollywood superstar George Clooney is a sufferer, and revealed he even contemplated suicide because of the pain.
But he had the money for treatment – I don’t!
The thought of never being able to laugh at my sons’ jokes, that I’ll lose my memory, that this pain will never go, is hard to live with.
But my boys keep me going.
Now I’m fundraising for the life-changing treatment I need in America.
I’m determined to laugh again.