Mum suffers unbearable pain due to rare condition which means her BRAIN is sliding into her spine

A MUM with a rare condition which means her brain is slowing sliding into her spine is often in so much pain she can't even lift her head off her pillow.

Sian Colclough, 29, from Wrexham, Wales, was first diagnosed with Chiari malformation in 2011 when she was pregnant with son Lennon, now four.

It means she feels as if her brain is too big for her skull and is trying to force its way out from her nose, mouth and ears.

She suffers from excruciating headaches which can even be brought on by her LAUGHING.

"I have good days and bad days but when I get really chronic headaches my brain actually feels like it's going to explode," she said.

"When it's really bad I have to have all of the curtains in the house shut and I sit there with sunglasses on watching TV.

"It's sort of like constantly having the flu without the cough or runny nose, I have chronic fatigue and on bad days can't even lift my head off my pillow for two days.

"I can feel my spine being crushed by my brain and the pressure is really intense, but it's something that I've had to learn to live with.
"I get really chronic headaches about once a week where I won't get out of bed but in between these the pain is a lot more bearable, sometimes these are triggered by something as small as me sneezing or laughing."

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Sian also suffers from muscle-wasting disease Charcot-Marie-Tooth and Ehlers-Danlos Syndrome, which causes her shoulder to dislocate easily.

Her Charcot-Marie-Tooth diagnosis came when she was 11 and it's also incredibly painful.

It causes nerve pain and means her skin isn't as sensitive as it should be in some places. Sian can cut or burn herself and not realise it because of the condition.

She often feels like she has pins and needles too and can't walk far, so often uses a wheelchair.

Sian was seven months into her pregnancy when she was told she had Chiari malformation. She'd been in hospital for two weeks because her baby was lying on her sciatic nerve, leaving her paralysed.

She was scanned to see what was causing that issue, which is when the other condition was found.

It was a massive shock.

"I was so blessed to find out that I was pregnant because when I learnt about my other condition I didn't think my body would be able to carry a child," she said.
"When I got the diagnosis I was terrified. I'd never heard of it before and since then I've found out even some doctors don't know about it.

What is Chiari malformation?

– A Chiari malformation is when the low section of the brain pushes into the spinal canal
– There are four types, the most common is type 1
– Type 1 means the brain is pushing into the canal, putting pressure on the brain stem, spinal cord and impacting fluid flow
– It's not life threatening
– Symptoms include headaches, neck pain, dizziness, muscle weakness, blurred vision and feeling or being sick
– Not everyone experiences these, some sufferers don't know they have it
– Surgery may be able to improve symptoms

"Lennon is so lovely about the whole thing and he always tries to help me out when he knows I'm struggling, he'll offer me his hand when I try to get off the sofa it's the cutest thing.

"He knows when I'm poorly and he's become accustom to the way that I am, if I'm feeling really bad one day he'll just come and lie next to me and watch TV quietly.
"I do think that my Ehlers-Danlos Syndrome is the thing that's the hardest to deal with, I'll dislocate my shoulders on a regular basis and have to put them back in myself which can be really difficult sometimes."

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