Two and a half weeks post op

Well.... Evie was doing really well after the first couple of bad days after operation - her first sentence after the op was "can I have a wheelchair yet?"! She had been so looking forward to having a try in a wheelchair! Which she mastered reversing and turning within about 5 minutes!

She had a couple of bad days after the op with a high temperature and headaches but these subsided and by day 6 was discharged.. She was happy to be home as we had 2 new springer spaniel puppies awaiting but after a few days of doing really well has slipped back.

She has been suffering with headaches and nausea especially - the neurosurgeon did advise that this was something to expect for up to 6 weeks!! It's really tough on Evie and she has become someone who is usually a lovely and happy to little girl who is lashing out and gets very irritated. We are learning that as the calpol wears off she gets these moods. It's so hard for her as she gets down and it's hard on the family too as they struggle to cope with the mood swings. I just hope she starts to improve for her sake, it must be horrible to feel like that. She has slept through the last couple of nights which has been fantastic, I had hoped it may make her feel a bit better but it doesn't seem to make much difference.

We do have some good moments too and have been busy making collages and having picnics in the garden which I am so grateful for! She is also having a friend round for a little while later in the week as we thought it would be nice and it's easier for me to keep an eye on her when we are at home - when we have been out she just wants to do what any other 6 year old wants to do but she can't yet.
We are hoping that she can go back to Ballet in September - also she loves her gymnastics which she has done since she was 3 and we hope she can go back to that maybe in September or October. We will just have to see how she does.

We are awaiting her post op appointment and the date for her MRI to check that all is looking ok. Should be in around 4 - 6 weeks time... we are off on holiday for a week so are hoping these don't clash! Also hoping she is able to cope with going away - I'm sure it will do her the world of good.

Well enjoy the sunshine all and will keep you posted.

The photo below is of Evie a month before her operation.

C x

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