- About the Conditions
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Hi, my name is Cerys; i am a 9 year old girl living with an Arnold Chiari Type 1 malformation with an acquired nystagmus. This is my story so far:
In January 2004 when I was 3 years old, I started having episodes where I would turn blue and get head pain when I coughed. I was referred to a peadiatrian for some answers but nothing was found other than possible asthma. I was an extremely clumsy child who was a regular visitor of A & E where I had fallen over and bumped my head. It wasn't until the year 2006 that things changed for me. I found myself choking on food and that I was having some visual problems, sometimes objects would appear in double, sometimes lasting for several days. One particular day everything in my vision was a bright white and my eyes were bouncing uncontrollably. I was taken into the eye hospital emergency department and things went worse for me from there........Over the months I had lots of scary tests, eye examinations, MRI scans on my brain and spine, sleep studies, neurological tests and heart scans. Eventually in June 2006 I was diagnosed with having an CM 1 with an acquired nystagmus and sleep apnoea. I looked and felt very weak and unwell. My head aches had increased and my nystagmus had progressively worsened, I had no energy left I was so tired.
In September 2006 my neurosurgeon decided it was time for intervention. I had decompression surgery together with the removal of the C1 and C2 arches. I was six years old and very scared. For the 12 days I stayed in hospital Mum and Dad stayed with me, it was scary, painful and horrible but the doctors and nurses were lovely. I couldn't wait to go home. After my surgery I noticed that colours were brighter than I had ever seen them before! And that my head pain had decreased and the doctors said that I no longer suffered with sleep apnea.
It has now been almost four years since my operation and I still can't escape this CM 1. I have to visit the hospital every 6 months for eye examinations, neuro tests and MRI scans, I can now have my MRI's without being anesthetised (mum and dad think I'm really brave) I can now eat my food without the fear of choking. I'm still really clumsy and can trip over my own shadow given the chance! But hey, that's just me!!!
I still get head pains that vary, but as I am older I can describe them much better. They are: "Flashing Headache" which is an on/off pain that can last for some time. "Lie down Headache" which is a constant pain that only goes away when I lie down. "Windy Headache" which is where I can hear and feel the fluid rushing and pulsating bring pain with each one. "Shooting Headache" which is a "normal" dull headache then every now and again I get a sharp stabbing pain that shoots from the back of my head to the front. I have kept a daily pain diary and I have noticed that physical exercise brings on my head pain. Over the past few months I have discovered that by constantly wearing shock absorbing trainers I am able to do far more and suffer less.
My vision is still a problem, objects that are in the distance are blurry and I still get double vision, especially if I'm tired or unwell. Sometimes for a few seconds or on a bad day it stays for a few hours. I am able to tell the real object from the double now as the double is slightly blurry, sometimes when it's really bad the double has a blue outline around it. I occasionally see big fuzzy balls of light floating around which can be yellow, blue or red or a grey wiggly line which hovers around in the air. These can be really annoying especially when I'm in school trying to work!!!
Because I have missed approximately a year of schooling, I have had to work really hard to catch up with my class. I still have days off school due to headaches or simply when I feel "Wrong" It's hard to explain but, I don't feel like me. Some days I can hear and see my teacher talking but I can't seem to actually "hear" what he is saying (If that makes any sense?) The words just float in one ear and then out again without any meaning or sense! Copying off the board is difficult as looking up and down constantly makes my neck ache so much! But my Teacher and friends are really good and help me out when I need it.
I watch my friends playing sometimes and I feel left out because when they are having fun on the trampoline or doing roly-poly's etc. I am only able to watch as I know that these activities will hurt me, and this makes me angry and sad! I have moments where I feel I can't cope with it anymore and I wish that this condition would just go away and leave me alone. My family and friends are fab but it makes me feel lonely sometimes that they can't feel what I'm going through. I can explain how I'm feeling but they don't truly understand.
On the positive side my Chiari has made me grow up to be a strong brave, independent girl who is ready to face any challenge thrown at me! Even though I have my down days, I won't learn to live with it; the CM1 can learn to live with me!!
And I'm going to continue working hard as when I grow up I want to become a dog handler for the police force.
Be positive my fellow chiarians!!!