Hi all,

Never done this before - so here goes.....

My 6 year old daughter was diagnosed in May with Chiari 1 Malformation and Syringomyelia. What I hear you say - don't worry I said the same!!

Chiari is more common than we think - but little known in general terms out there! There are different types - type 1 being the most common, which is what Evie has. Chiari is where the skull is too small at the bottom and basically pushes the base of her brain (cerebellum) out through the foramen magnum and into her spinal cord pressing against the brain stem. It can block the travel of CSF (cerebral fluid) flow. Chiari causes many symptoms, the main one being severe headache and nausea, blurred vision etc. She also has Syringomyelia - these are a build up of CSF fluid inside her spinal cord which causes cyst like pockets, this can cause a lot of issues from back/neck pain, sore legs/arms, pins and needles etc and if left can cause eventual paralysis. I'm not a Dr so this may not be 100% accurate from a medical point of view but I have done a lot of research myself as even the GP doesn't really know much about it - so relying on the neurosurgeon and internet!

Evie had been having symptoms of headache, neck pain, back pain and vision issues. We were referred for an ultra sound scan but this picked nothing up - but the Dr was not happy due to the headaches so referred Evie on for an MRI. They picked up abnormalities on the first one (only of her head and neck) and then ordered a second one which was a full brain and spinal scan - which showed the Chiari and Syringomyelia.

We found out towards end of May and Evie had Decompression surgery, including Laminectomy and Duraplasty on 3rd July 2014. The day of surgery was the longest day of my life! Down at 11.30am and I was allowed into recovery at 4.30pm.. The surgery went well I'm pleased to say :) (And I was grateful for the amount of coffee that was available from the coffee shop!).

She was home within 5 days, which I think is pretty amazing considering it was brain surgery! But I guess that's children for you.. Evie's brother and sisters have been fantastic with her as has my partner - obviously this has an impact on all the family and is very difficult to understand and how we all deal with life from now on.

I'll keep you posted on how she gets on.

 Thanks for reading my blog, let me know if I need to give more info :)

xx