We wish you a Merry Xmas And a Chiari New Year!

I managed to con my way out of hospital as i wanted home for Christmas but I knew that I still wasn’t right. All through Christmas I felt ill and spent most of the time in bed. 
New Year’s Eve i was in all day on my own. On my way back from the kitchen with my lunch, I had stupidly used a glass and a plate and I collapsed. I woke up in a pool of blood as everything had smashed and I’d “glassed” myself in the face. At that my aunt came in the room thankfully. I must have a guardian angel as my aunt wasn’t due to come over that day! 
So that was me on my way back to the Southern General Hospital in the back of an ambulance on New Years Eve. 
Back on the ward after an MRI and and a row from Mr O Kane my Neurosurgeon I’m told I will have decompression surgery number 3 on New Years Day. What a great way to start the year!
On New Years Day I’m tag teamed by Mr O Kane and Ms Brown. Half way through the surgery they abandoned the surgery as they said it would be too dangerous to continue. The meningitis had caused so much scar tissue that they couldn’t see what they were doing and there was too much risk of nicking my brain stem. Instead they took away more more skull. 
I was really ill and in bed a long time. When it was time to get up my legs wouldn’t work!!! My legs had actually stopped working!! It was heartbreaking! I just sat crying at the side of the bed with the nurse. 
They transferred me to the Physical Disability Rehabilitation Unit where I learned to walk again. The physiotherapists were great. It was hard going and a lot of work. You feel like giving up at times and you think you will never do it!!
I couldn’t believe at 29 years old I’d be learning to walk! It mucks you up psychologically!! One minute I’m running a house, running after my daughter who had been in a spica cast and working full time now can hardly do a thing for myself!!! It’s embarrassing!!! You just need to think these things happen and you have people that rely on you and you just need to try and get as better as possibly can!!
Please continue to read my blogs as I relive my chiari story 
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Love karen x x


Oops….my brain did fall out my head!

Who stole my cerebral tonsils???

After my first decompression surgery my brain fell straight back down into my spinal canal. I also took a reaction to the dura plaster and developed meningitis. A huge ball of fluid formed in the back of my neck due to the blockage and infection. 
They decided to start me on a course of strong antibiotics to fight the meningitis. To empty the ball of fluid they decided to do my favourite thing, a lumbar puncture!! Three lovely not so pain free lumbar punctures later the problem isn’t fixed!
They decide on decompression number 2!
Causing the blockage was my cerebral tonsils which are at the bottom my brain. They decided if they are going to keep causing a blockage let’s just whip them off. So the neurosurgeons stole them. They didn’t even ask me first!!! They also took MORE skull. 

They removed the dura plaster and drained the fluid and that seemed to do the job……for now!
I continued for what seemed a lifetime on a cocktail of antibiotics for the meningitis and eventually it decided to leave!!! 

Being in hospital for that length of time was very lonely and scary at times. I made some great friends with similar conditions on the ward so that really helped get us through!

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Love Karen x x x

It’s not as if my brain is going to fall out my head?!

So I’ve done it I’ve joined the blogging world!

I wanted to start a blog that helps people understand what chiari is, goodness most of my doctors don’t know what it is!!

Chiari malformation is a condition you’re born with where your skull is not the correct shape/size for your brain and your brain slides into your spinal canal causing a blockage. This causes all sorts of problems, mostly represents itself as pain to start with.

I have suffered pain since the age of 7 and after years of migraines and sickness I was diagnosed with chiari malformation when I was 17 at a migraine clinic at the Southern General Hospital. From then on I managed the pain with all sorts of pain relief and referred to pain clinics.

When I was 29 I was referred to my Neurosurgeon Mr O Kane. He recommended I have decompression surgery as I found out I now suffer from Syringomyelia too. This is where the spinal fluid forms a ball (cyst) and presses against the nerves of the spine causing permanent nerve damage. He said that decompression surgery should alleviate this.

Decompression surgery is the attempt to make more room and allow the spinal fluid to flow normally again. In my surgery they removed some skull,  my first vertebrae, shrunk my cerebral tonsils and opened the dura matter which covers the brain and the spinal cord. They put a covering over the dura called a patch.

I should have known this was not going to go well when my operation was Friday the 13th 😬😬😬😬

I developed meningitis, hydrocephalus and was 8 months in hospital! I got married August 2013, operation September 2013. Was the VP Shunt my wedding present and the 8  months in hospital my honeymoon?! Lol

15+ brain operations later disabled and housebound I’ve realised I want to help others like me. It’s not an easy journey! It’s painful and lonely and no one has heard of Chiari!! If I can help at least one person I’ve done some good!!

I have my own facebook page Chiari Support UK

please join us and spread the word!

Lots of love

Karen x X x