Chiari and me
3 August 2016
Mark is a resident at Seven Springs care home. He sent us this article to tell his story and help people understand his disability.
I offered to write this for Leonard Cheshire about my condition, to help people understand it.
I have Chiari malformation (or Chiari for short, named after Austrian pathologist Hans Chiari). I also have hydrocephalus (commonly known as 'water on the brain'), and a spinal disorder — both of these caused by Chiari.
'So what on earth is Chiari?' I hear you ask!
In the simplest terms, I have a big brain and small skull — my skull is too small for my brain.
How did I come to have this condition? My neurologist and neurosurgeon can't be certain, but it was most likely caused by problems when I was born.
I was born as a breech (feet first) and my head got stuck. I was without oxygen for quite a long period.
Initially, my family were told I had died. They were later told I had survived but would be paralysed for life.
But here I am, alive and kicking today!
Getting a diagnosis
As I grew up, I had problems with learning to walk, sports at school, and numerous other issues. All of which were dismissed by the GP as, 'Mark is a clumsy child. He'll grow out of it.'
Fast forward to my teenage years. Things didn't get any better. I was still having the same problems and a lot of falls. Thankfully I didn't do any major damage. My parents frequently said something wasn't right, and I should go back to the GP.
But being a stubborn teenager I refused to go. Deep down I knew I needed help, but I was 'living in Egypt' at the time — yes, I was in 'de Nile' (denial — you're getting my sense of humour now!).
Eventually I agreed, and had a lots of tests, MRI scans and consultations. On Friday 13 September (of all days!) 2002, I was diagnosed with Chiari.
I was told to go home for the weekend and they would operate the following week, to make space around the base of my brain.
Horror stories and strange experiences
I was under strict instructions not to read about the condition on the internet, as there are a lot of 'horror stories' and incorrect websites.
Of course I did the complete opposite. I read all manner of websites and scared myself stupid — to the point I almost refused to go back to hospital!
But I did have the surgery. My post-op recovery was complicated for various reasons, including contracting MRSA and an eight-week spell in intensive care, during which time I had some strange experiences. (I was convinced I was on board the Starship Enterprise and the ICU staff were Klingons!) But I got through it!
My fantastic neurosurgeon was happy to discharge me from his care, with the friendly words:
'Mark, you're the most challenging patient I have ever had to operate on and I never want to see the back of your head again. If you need any more surgery, please ask another surgeon!'
By this time, I had got to know him really well, so I was laughing at his humour. He also explained to me that he didn't want to operate on me again as he viewed me as a friend.
The problems continue
Over the next couple of years or so, I was reasonably stable. Unfortunately the good results didn't continue. I started to notice a return of the headaches and other problems, especially with loss of balance.
I contacted my consultant for advice in 2014. He put me in contact with another surgeon I already knew, through my membership of the UK's only charity dedicated to people Chiari, Ann Conroy Trust.
I had a load more tests, MRIs (deep joy — I hate MRI scanners) and was operated on again twice. They made a hole inside my brain to allow the brain fluid to drain.
All went well with the surgery and I went back to my parents' place to recuperate. I was still very unsteady on my feet though.
About two weeks after the operation, I was at home and had the fall of the century. I banged my head and caused a huge brain haemorrhage (brain bleed).
I had two further operations, but as a result of the damage my balance, coordination and walking (amongst other things) were unable to the repaired. From hospital, I spent a spell another in community hospital, then a neurological care home, before moving to Seven Springs.
Moving to Seven Springs
Seven Springs has been the best thing that has ever happened in my life — I love it here.
I have met so many great people who have helped me to come to terms with the huge changes in my life.
The staff are amazing, the food is great, and the physiotherapy I have is helping me no end. In summary, Seven Springs is perfect for me.
I have been through a lot of challenges in my life but I want to say to anyone reading this who is going through a tough time – do not give in, you will get there.
P.S. This story is based on my own experiences and is in no way necessarily medically accurate. I am not a specialist or medically qualified!