Chiari Daily Life

      I figured that it may be time to try and remeber all of my symptoms and put them to paper so this may actually help some one some day. Before the decompression surgery I would randomly pass out becasue the pressure would build up at the back of my head. For years my husband thought that it was hilarious to make me laugh so hard that I would pass out. Little did we know that doing that I could have been blind or paralyzed with any of those instances. Holidays I always seemed to end up in the hospital because the stress would bring migranes that really just left me waiting for death.

     Since the brain surgery I have daily chronic pain. And to the point that some days I cannot physically get out of bed without assistance. I used to take vicodin for this, but the amount that I had to take just to function through the pain started to kill my liver. Sooooo, they put me on Lyrica. This makes a good amount of difference in the daily pain, but does not however help at all with the trigger pains. I.E. loud noises, bright lights, stress, ect. . . Besides the pain I have these odd siezures now that I have NEVER had before. The Lyrica is supposed to be an antisiezure medication as well but I do not really see a difference. The Lyrica itself is a pretty heavy medication and at 23 I do not drink alcohol at all anymore simply becuase I cannot mix it with my medicaitons. Its a pain trying to explain to people that I do not nor have I ever had, a drinking problem. I choose not to drink for me.
      On the more minor side effects list, is the hearing loss (I only can afford one hearing aid right now), mild dementia (SUCKS!!), and the random vision loss. There are times since I was pregnant with my daughter that my vision either partially or completely goes away for a few hours. It seems to be related to stress levels but not always. Within all of these random things the onset seemed to be the brain surgery itself. A few neurologists related many of my issues to the daily pain, but a few also told me that I wasnt sick at all. I think that this is the biggest problem I have faced from day one. I have seen well over five different specialists and they all had completely different things to say about the Chiari, the answers ranging from "what is that?" to "DONT LAUGH YOULL DIE". Sad thing is that I am not joking. . .
      There are quite a few more minor issues that I seem to have on a day to day basis as well as the more major things like the stroke that I had, but I cant really think of what else to say about it. . . .

Done for today!!