On January 31,1998 my husband and I were on our way to the grocery store for our normal Saturday shopping. Just as we turned the corner into the store I felt a pain that radiated through my neck and back and through my head. I thought I had somehow pulled a muscle...more like every muscle that existed and that my head was going to explode. My husband stopped the car and at that point I was feeling extremely warm and couldn't move at the same time. I felt that I had to get out of the car which I did and just stood there breathing very hard and feeling like I was going to pass out. This went on for about 15 minutes. My husband finally managed to help me into the car and we went home. I had no idea what had occurred, just that I felt really bad and had trouble moving around, as if my head and neck were in a vice. I decided to take a muscle relaxant and lay down to rest, which is where I stayed the rest of the weekend.
By Monday, I knew I was not any better and went to my regular MD. He had me go for an x-ray across the hall and scheduled a Cat-Scan at the hospital. By 1:00 that afternoon I was admitted to the hospital and told that I was very lucky to be alive. I did not realize until that point how serious my condition was. I remained in the hospital for a week and through a series of tests was told that I had an AVM which was very close to my vision center. I was also told that the likelihood of a reoccurrence was extremely slim.
Guess what.....Two weeks later I had another bleed. I was again admitted to ICU and a decision was made to have an embolization performed. Unfortunately, because of the location of the AVM it could not be completed as it surely would have caused me complete blindness. The only other option open to me was radio surgery. This is a procedure where they attach a metal crown to your head and through a multitude of calculations shoot radiation beams to the area of the AVM. This process causes scar tissue to form and block off the entire area of the AVM. It is a two year process and the scar tissue does not start to form until the 2nd year. I am approaching the end of my first year and counting the days till that good old tissue starts to accumulate.
I have a lot of problems with my vision. Specifically, a constant flashing in my peripheral vision that never goes away. Sometimes I will close my eyes and try to envision what it was like when it was totally clear.
My short term memory is not so good so I live with pencil and paper handy most of the time.
After reading many experiences of others I consider myself extremely lucky and wish there was something I could do to help others.
I have come to treasure every day and welcome any thoughts and experiences of those who wish to share them.
Update 27 Aug 2000
I have really great news! Last week I had a cranial angiogram and it showed nothing, absoutely nothing. It's been almost three years since I had my bleeds and the discovery of my AVM and about 2 yrs since my radio surgery. To say that I am jubilant is an understatement!!!!!! I truly feel like the luckiest women on the planet... I honestly did not expect results like this so soon because I heard it can take longer than this.
To all of you out there who gave me support, understanding, encouragement and the will to go on, Bless You!! It would have been a much tougher road without all of you and I was so lucky to have your support.
Thank you from the bottom of my heart.
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