EDS is a genetic condition and with this comes the expectancy of "How long am I going to last with this or when am I going to get my ticket off this planet?" Well it is a question I have never really wanted to know, especially with sayings like...."You have more chance of being killed by a terrorist than getting married after 35". Considering I am 37 and have yet to find my 'Prince Charming' those odds suck. However, when genetics play such a large roll in any ones life it is something to consider. EDS has many types, as I am sure you now know, but the good news for me is..........I have a completely normal life expectancy. YAHOOOO!!!!
In July 2006 I simply popped my neck back into place (as all Classic EDS have loose joints) and as I was rushing to make dinner for guests, I was very vigorous on the popping. I felt a strange 'whoosh' in the base of my head and within the hour my head felt very heavy. A couple of glasses of wine seemed to fix the dull pain and I went to bed. The next day I had a terrible headache and thought that perhaps I had a wee 'wine headache'. That night I went to bed and could not get comfortable. The pain in my head was heavy, and it felt like I was lying on concrete. Monday turned up right on time and I went off to school. I told my babies (my 5 year olds I taught) that Miss Brewer had a terrible headache today and made sure to remind them to talk in there very quiet inside voices. By 10am I started to have the on set of a migraine, I had blurred vision and my head felt like lead. I left my class and went to the sickbay for more panadol. I spoke to the Assistant Principal and she was convinced my neck was out and was going to ring for one of our Chiropractor parents. I said I had to go home and lye down, it was just a migraine and I was going to be fine. That night I was not fine and I called my Mum crying with the pain in my head. "Go to the Hospital now!" were her exact words. So I did. My boyfriend at the time took me. I was so moody and in so much pain in the base of my head.
At the hospital the Desk Nurse asked me out of 10, what was my pain like. I held my head as I was convinced at any moment it was going to fall off and said it was a definite 50 out of 10. I was ushered straight into A & E and the rest was a blur. I was given morphine and the amount of test I had was astronomical. The moment I said I have EDS the blank faces emerged and in my slurred, drugged speech, I told them to 'goggle' it. I had a spinal tap, many bloods taken every couple of hours, M.R.I's, absolutely e.v.e.r.y.t.h.i.n.g!!!! I was a little embarrassed in my drugged state as I thought, "What a lot of fuss over a headache, they better find something".
They certainly did, I had a 'left vertebral artery dissection', I had broken one of the main arteries in my head by putting my neck back into place too roughly. The heavy feeling in my head was blood congealing and it was so much more than just a headache. The scariest thing was, I had to then wait for 6 days in hospital to see if I was going to have a stroke. I was only 35 and I couldn't possibly have a stroke, worst of all the doctor told me if I had not come to the hospital where I was being pumped with blood thinners, I could have died.
The amazing thing is, is I didn't, I didn't have a stroke, I didn't have speech or gross motor skill problems, I was OK and after a few months of warfrain (prescribed blood thinner), 101 blood test (I looked like a heroin junkie with all my track marks), a few more months of Cartia (more blood thinners), I was fine! At my 1 year check with up Dr Singh, he was impressed and so was I. I had suffered no side affects what so ever.
Almost two years on, I don't put my neck back in anymore, and I am still 100% fine. It was a huge fright and I am careful now not to lift heavy things and when I am exercising I don't put any strain on my neck. I was really lucky and I know I was and that has helped me to become even more positive about my life. I don't 'sweat the small stuff', I don't spend quality time with people who bring me down, and I love the people even more that hold me in there hearts. There's nothing like a near death experiences to make you see rainbows where ever you go!
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