Tuesday, 26 May 2015

Hattie's Arnold Chiari Malformation diagnosis story

Hey everyone, I'm Harriet, the little sister. I was diagnosed with Arnold Chiari Malformation in 2010 and have already undergone the brain surgery my sister is yet to have. I have been so busy recently so haven't been able to post anything yet, although I think my beautiful big sis has done an amazing job so far! This is my first post all about the build up to being diagnosed with the brain condition.

I was a normal 13 year old girl, I loved school and my teenage life was just beginning. I didn't really have a care in the world (apart from trying to steal all of Georgia's make-up and clothes). Everything was changing at this time in my life; I was really starting to grow up. In 2010 I started to get horrific headaches and begun to notice that my balance was getting really bad… ‘Oh it's just hormones!’, I always said to myself. But then weirder things started to happen to me and I asked myself: ‘why can't I swallow properly without choking?, why do I have disabling headaches countless times a day?, why am I throwing up every morning?, why can't I walk without nearly falling over?, why have I started to mumble, nobody understands what I'm saying?!, why can I never remember anything?...what is happening to me…?’. 

I knew it wasn't just hormones.

I decided to now tell my family that something wasn't right with me. My mum and I went to the doctors and as soon as I told the doctor I was sick after breakfast every morning, she asked me what I ate for breakfast, I replied with porridge...thinking, why the hell is she asking me that?!. ‘You are probably lactose intolerant, cut out dairy for a month and see how you get on’. Oh great, that explains the sickness! But what about all my other problems? I knew I wasn't okay and that there must be something else causing all of these problems. So, I cut out dairy for a month and of course it did not stop me being sick and my other symptoms were just getting worse, I was not lactose intolerant. I returned to the doctors once again and I had baffled them - they had no idea what was happening to me and referred me to Watford General Hospital where I saw a paediatrician who checked all my reflexes. I will never forget the worry I saw in her face as she was checking me. She sent me off to have an MRI scan of my brain, neck and spine. Even now, I wasn't really thinking anything of it all, I was worrying more about boys and what was going to happen on Hollyoaks that week, if only I knew what was coming!
That same week, we got the results of my MRI back (normally they take weeks to get back to people), with the quickness in which they got back to us, we knew something wasn’t right. ‘We have found something wrong with Harriet's brain, however we are not trained to tell you what is wrong. You have an appointment at Great Ormond Street Hospital in London this week, where you will be told’. YOU CAN'T TELL US?! Torture is the only word to describe the next two days building up to my appointment at GOSH.
The day came. Georgia, mum, dad and I all got the train to Great Ormond Street, I have always loved London, so I was excited to be going there and wasn’t really thinking about why I was going!
We were all in the waiting room, when my name was called. Georgia wasn't allowed in, just mum, dad and myself. The neurosurgeon was so lovely and just started off doing a few reflex tests on me, and then he sat us all down taking us through my MRI scan and showing us where the problem was. ‘Harriet is in urgent need of decompression surgery. Decompression surgery involves removing a chunk of the skull, to relieve the pressure off her brain. This pressure is causing the tail of your brain to fall down and crush your spinal cord - and is causing all of these problems. If Harriet does not have this surgery, she will slowly deteriorate and eventually be unable to walk, talk, or feed herself.’

The only way I can describe how I felt at this moment was like in films, when the character has taken drugs and their vision goes blurry and it sounds like they’re under water. I couldn't hear a word the neurosurgeon was saying after that. How was this happening? This can't be real, I thought to myself, this stuff is only in films and Holby City! I had never even had a tooth out and they wanted to take some of my skull out?! All I remember after we came out of the room is my sister running over and I collapsed into her arms, crying like I have never cried before and probably never will again. This was real and was happening to me.

It was August 2010 when I was diagnosed with Arnold Chiari Malformation, I was booked to have my surgery on 19th of November, 2010.

My next post will be all about my experience having the decompression surgery. Thank you for reading, if you have any questions please feel free to comment or contact me personally! x

1 comment:

  1. I feel your pain, I too have chiari and EDS. I grew up with health problems my whole figure, but none of the doctors could ever figure out why. Finally when I was 27 years old they figured out what was wrong with me. I had the decompression surgery about 9 months after they found it. Only problem for me is the surgery did not really help at all. All the problems you talked about what you had when you saw the doctor is what I have plus so much more. This illness has forever changed mine and my family's lives forever. I live in Virginia in the USA and most doctors around here have no ideal what chiari is so must of us can't find help. I'm so glad you girls have started this blog I hope it helps people too. I'll go in more detail about my story one day just don't have the energy to do that right now. That's one part that really sucks is I'm 29 now and have no energy and live in great pain 24/7. Hope they might find us better help and relief one day.