My journey

My life with Arnold Chiari Malformation
My name is Kelly John i am 27 years old and September is Arnold Chiari Malformation awareness month, I was diagnosed with Chiari in 2003 it is a condition affecting the brain it consists of a downward displacement of the cerebellar tonsils through the foramen magnum (the opening at the base of the skull), as a result of obstruction of cerebrospinal fluid (CSF) outflow, It can cause headaches balance loss poor coordination dizziness nausea vomiting many others, for me it also cause a nystagmus, I was diagnosed with this when I was 13 years old it was a lot to deal with at that age I didn't understand the condition I didn't know anything about it, my paediatric doctor requested an MRI and she was the one who diagnosed me with Chiari and sent me to a neurologist to take over my care, I was told not to worry most people who have Chiari don't know they have it and that I should be ok, things started to deteriorate pretty quickly but i thought that because i knew i had a brain condition that maybe it was my mind playing tricks and pointing out problems that weren't there so i didn't say anything to my parents, then this got a lot worse the headaches became debilitating i couldn't concentrate because my head was pounding i was constantly nauseous, my balance became so bad i was falling over all the time i was spending most days just picking myself up of the floor i started to get angry with myself, my eyesight deteriorated i could no longer read i was so embarrassed that i would just move my book mark through my book rather than tell my parents that i couldn't read anymore, i finally told mam and dad and they sent me to  my GP who referred me back to my neurologist who contacted a neurosurgeon, he decided that I need a decompression operation to remove the pressure on the brain and hopefully make life better, in 2005 I had my first decompression the neurosurgeon I had was very sure of himself and told met that after the operation I would be cured little did I know at the time that there's no cure for Chiari Malformation, I was told I had to have the surgery that the cerebellum of the brain was compressed and the pressure needed to be released that is I didn't have the surgery I could potentially become paralysed at a later date, so there was no second thought I went straight for the surgery and I would do it again if I had to, it was a hard recovery a lot of pain but my parents got me through it if I didn't have them I don't think I could have coped at all I remember my dad sitting next to me all day holding my hand telling me I was beautiful and that he was proud of me, they had pull out beds on the ward so dad slept by me on the pull out bed it meant so much to have him with me my mum stayed in the accommodation they had so she was never far either, i spent nearly two weeks in hospital and then went home to recover, I had a home tutor so I could carry on with my school work and went back to school for a weeks and then did my GCSE's, I went to college everything was going well and then I started to notice my health deteriorating again I went back to my GP who referred me to my neurologist and he told me I was fine it was in my head I couldn't cope with not having anything wrong with me anymore, then about a year later they did an MRI and decided that I needed another decompression and again cerebellum was compressed the neurologist I previously had was now retired so I was referred to a new one he was really good, he took his time explained what was going to happen and answered any questions I had he made me feel comfortable, I was told that my previous neurosurgeon hadn't done the surgery properly that he had taken away too much bone so that's why by brain has moved back down was because it had nothing to hold it in place he also didn't put in a dura patch that is to protect the brain after the surgery, so my brain had become fussed to the muscles in my head and that's what was causing most of the pain because every time i moved my head the muscles were pulling my brain so he had to separate that before he could do my decompression, I had my second decompression in 2008 I was in hospital for just over a week again my dad sat by my side everyday holding my hand telling me how proud he was and that I was beautiful I didn't believe him about the beautiful part still don't, I was told as I was leaving hospital by my neurosurgeon that he had noticed something on my MRI that I had another condition called a craniovertebral junction abnormality or CVJ,  where as the Odintoid Peg should normally be straight mine has a kink in it so it's pointing backwards and putting pressure on the front of the brain stem spinal cord, I was told not to worry it shouldn't cause any trouble and that if it does one day then we will cross that bridge when it comes to it, but the kicker was being told that if my first neurosurgeon had noticed this first of all the i wouldn't have had to go through the second decompression just remove the bone if he did that first might not have needed the first, the recovery took a bit longer this time it was hard on my system, but this time things didn't get any better it just stayed the same headaches and balance didn't change nothing, and then things started to get worse again I went back to my neurosurgeon who booked an MRI he said I needed another decompression, but I was told that most of the problems could be due to the CVJ and that I needed an operation to sort it out, I was told that in total I would need three operations the first would be to do the decompression and drain the CSF, because I had so much bone taken out in my first decompression I would need a bone graft because there wasn't enough room to put the pins in place in the remaining part of the skull, because I had so much CSF that if he did anything the bone graft would just float away so they needed to drain it off before they did anything, I had my third decompression in 2012 he did the decompression he drained the CSF through a lumber drain I was in for just over a week it was a hard recovery again but again my dad sat by my side everyday day when he visited he held my hand said he was proud and that I was beautiful, laying in my ted stockings and hospital gown very pretty lol, I don't think dad knows how much he and mum helped me through my last operation and still helping me cope now, the recovery for this operation was terrible spent what felt like two months asleep and I had a few hospital visits in those few months but in the end everything went ok, I saw my neurosurgeon a few months later to find out more because I was told before my last operation that the second surgery of the three would be to put in the bone graft made from my hip, take away the CVJ and put me in a halo and the six months after that put the pins and plates in place, my neurosurgeon said that he couldn't do the other operations that if he did there was a very high chance of me dying on the table because that if he took the bone out there was nothing holding my head up and that if by some miracle I survived the operation there was a high chance I would die anyway because if my head moved my spinal cord would snap and that would be the end, so there was no second thought I was not going to go through with the operation I liked my life to much to throw it away for an operation that might not even help with my pain, it's now five years on from that operation nothing has changed still in as much pain and balance is still as bad, while all this was going on i was having drop attacks and what i like to call funny feeling's nausea dizziness tingling all over my body that always started with the warning when i had a really warm back, i would completely faze out and just stare this would happen for about 1-2 minutes, but i always put it down to the Chiari i was sent to a neurologist to see what could be causing the drop attacks i found out i am epileptic and that is what has caused the drop attacks and funny feelings, they have been seizures all along so i now have this to live with as well the good thing is the epilepsy is controlled by medication this is the one part of my life which is slowly getting under control still playing about with tablets but getting there, i still have severe headaches it never really changes on the Chiari side of headaches i have never been able to shift them Arnold is stubborn, but on the Migraine side i have been having Botox and it has helped so much it's so nice to have a break without constant Migraines, as i said to Mam with this pain settled i can concentrate my mind isn't clouded by pain i have at least six weeks break with a few here and there, balance still terrible but i have Steve The Stick to help me around still wonder off sideways, always joking saying that i really wanted something in that shop or over there or down there lol,  and my nystagmus is still awful but i have glasses to help on the bad days really i should wear them all the time but i am a rule breaker lol, I don't know what the future holds and I do worry that what if something happens and the CVJ moves and I and up paralysed or worse, but I try not to think of that life is good things are slowly going in the right direction, i believe that with everything that has happened it has made me a better and stronger person i know i will never be normal but who wants to be normal anyway life would be so boring. I don't know what tomorrow holds whether it will be a good day or a bad day but I will live them as best I can. 

I would like to thank you Mam and Dad if I didn't have their love and support I would never have been able to get through this I am a stronger person because of them, they have been there for me with everything that has happened they have been by my side supporting me every step of the way, I couldn't ask for better parents I love them dearly and I can never thank them enough, I would also like to thank my brilliant family they are always there for me giving me support when I need it, they cheer me up when I need to smile and laugh, they listen and support me when I need to talk, and they kick my ass when I need it there is no way I could ever become depressed with my family they wouldn't allow it lol, Thank You xx

Beneath are pictures of my scar after surgery with staples and healed ones taken after, there is also a diagram of what Chiari looks like and an MRI of a CVJ abnormality it is not my scan it
is one I found on the Internet.