All about me!

When I was about 6 years old I was at school, stood on the grass and messing around with my friends. I laughed, hard, at something I cannot recall. I laughed so hard that for around a minute I could not see anything except flashing of grey and black in time with my pulse. I thought this was normal, as I guess I had been having these types of episodes all my life, so why I remember this moment is something I cannot work out. As far as my 6-year-old brain could work out, I was supposed to get headaches when doing anything that required straining, such as laughing, coughing or lifting. Even the act of turning over in bed caused the flashes of pain in my head. I never mentioned them to anyone when growing up. I went through school without taking anything more than 5 days off sick in 12 years. I never went to see the doctor, I had never had a blood test and other than routine vaccinations, I had never had an injection. I was, at the age of 18 told I had a pretty bad squint, which developed suddenly, so I just got used to wearing glasses everyday, this was, due to various errors not followed up in the way it should have been.
When I was 21 I was working in a school. I was loving life, had just moved out of the family home and was enjoying everything about growing up. I, whilst playing badminton, developed pain in my wrist. This developed to tingling in my ring and little finger, followed by me being unable to straighten my hand out. A simple trapped ulnar nerve was what my doctors told me, except the 3 nerve conduction studies and other tests I had did not corroborate this. I was given a splint in February 2010 and told to muddle along as best as I could. I soon developed tingling in my toes and feet.

On a Thursday in March 2010 I laughed, very hard at work and everything went black. I got my vision back to find I had stumbled and was sat down on the floor. This lead to a headache, so painful and annoying I was forced to take 3 days off work. I tried every trick I could think of to get rid of this pain.

By the time the Monday had rolled around I gave up. I assumed my glasses needed a new prescription and I was feeling annoyed at having to spend too much money on a new pair. Tuesday afternoon and I saw my optician. I told her about my double vision, my headache, the shifting of my sight in my peripheral vision, the wobbly movements of my vision. My optician panicked, big time. She had seen swollen optic nerves, an adult onset squint, which should have been investigated and nystagmus. A few moments later I was given a letter and told to get to hospital, right that moment. I left the opticians, drove home and went to bed. I think I was shocked, I didn’t even tell anyone what was said. Went to work the next day, I remember nothing. I went home, was very sick, drove to my Mother’s house, passed out and went to hospital, finally.
I was rushed in, given morphine and antisickness. 2 weeks later, following CT scans, lumbar punctures and far too many tests I was diagnosed with Chiari Malformation Type 1. I had a 14mm herniation, which reached to just above C1. I also was told I had syringomyelia, with a small syrinx.

At the end of July 2011 was the day I lost half of my hair, or to put it into proper terms I had an Occipital craniectomy, C1 and C2 laminectomy with duraplasty . A big bit of the base of my skull was removed, the back of C1 and C2 was removed, my dura opened and a patch placed over to make the area bigger. The surgery took just under 6 hours. I felt great 24 hours after surgery, I went out into the hospital grounds and had lots of visitors. That night however, I was screaming in pain, I phoned my Mother at 2am begging her to help me. Nothing was done, except I was given a load of painkillers and I slept.

I was sent home just over 48 hours after surgery started. This was the Monday. On Tuesday I was unable to get out of bed and I was sweating so much I might of well as been in a bath. I went to the doctors and was given oromorph. The Wednesday I slept or cried all day. The Thursday I felt sick, couldn’t keep my eyes open, even when vomiting and was shivering. I went back to my doctors who told me to go home and sleep. I was sobbing and my best friend told me to go to hospital and ignore the doctor I had just seen.

The next day following lumbar punctures and a CT scan, with a fever of over 104, I was told I had meningitis and the day after that I was told it was a scary case of bacterial meningitis, no wonder I felt so bad. I was put onto oral antibiotics, IV antibiotics and steroids. I felt no better. More, in depth scans followed and we found out what happened to me the second night after surgery. I had a brain hemorrhage, big enough to split the bovine dura I had put in. This caused a large pseudomeningocele to develop. They decided to do yet another lumbar puncture, telling me if the pressure was over 20, I would need a lumbar drain. As they inserted the needle, my wound split open, leaking lots of CSF. Also the reading was over 65, even with the amount of fluid I had just lost so the drain was placed to try and drain it. 7 days later it was removed. 7 days after that they did another lumbar puncture, this time my pressure had hardly changed, reading 60. My eye sight was getting worse rapidly, my visual fields decreasing and my squint getting worse every 3 days! I was sent home after over a month in hospital.

2 weeks later, feeling no better and having another fever I was readmitted. Again my pressure was very very high, but also showed I had chemical meningitis, probably caused by my body no liking the dura patch. My squint had again got really bad. I was given steroids and after over a month in hospital I was allowed home, with no plan. November 2011, over 3 months post op.

So, I went back to work, I was vomiting everyday and couldn’t lie flat. I cried often and lived on many tablets. 11 months post op my wound opened a small amount at the bottom and leaked CSF. I was sent for ICP monitoring for 48 hours, this was done exactly 1 year after my last surgery. I am yet to get the results from this but know the pressures were at -20 or worse when sitting up and at +90 when flat. I have continued seeing the eye hospital every month or so, with my squint getting worse at each visit. They, at my last visit in August, saw a bleed behind my right eye, my vision had got worse again, my squint had got so bad they were unable to correct it with both glasses and press on prisms. I need lots of tests done to look at this. An MRI I had done at an independent scanner showed my herniation is now down to C2, despite surgery and measures closer to 40mm, in comparison to the 14mm before surgery. I have been diagnosed with scoliosis since surgery. I have no idea what is to come or what is going to happen to fix my headaches. They are worse now than ever. I know Chiari will stick with me forever. I will forever have a large scar, I may be unable to really laugh and I dread any cough or cold.