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I was diagnosed with Chiari Malformation in the late fall of 2008. I met with Dr.Oro for the first time in January of 2009. When I met with him he looked at my MRI and talked to us about what Chiari was and told us that I would some day need surgery. I was a candidate for surgery at the time, but there was nothing on my MRI that showed urgency. We did enough research and decided quickly that the risks of surgery seemed too great with my current quality of life. It is so easy to find the really scary Chiari stories online. (and I found them all)
>>FF>> September 01, 2010 I went in for a check up with Dr. Oro. I knew things had changed and I didn't feel so good. (lots of numbness, chronic pain in my neck/shoulders and fatigue. John was out of town - and I expected him to tell me that things were different, but manageable still. I was so wrong. He took one quick look at my MRI and told me I was going to have surgery. We all probably remember the story of the next couple agonizing months - with magical energy healings and the best support group of friends a girl could have.
>>FF>> August 01,2011 - 11 months later I am good. I was back for a check up. (un-easy to tell him I had fallen) and wondering what kind of follow-up that may have. I took John with me not to jinx the day (since he was out of town when I got the surgery news last year) My appointment couldn't have gone smoother. My MRI looked great - he didn't even mention my syrnix (which means there was none, it's gone)
In conclusion he told me to continue to take it easy - go at about 30%.. and then gradually work up to my goal in whatever I am doing. (30%?) I was going at 30% in February. I told him of my yoga and tennis and even my 4am IKEA adventure (showing that I have my stamina back to go to opening day of Ikea.. that was a milestone) Maybe then he realized that relaxing isn't really in my vocabulary.
One more highlight - the nurse asked me if what medications I am on. I was so proud to answer, NONE. (she even seemed like she didn't believe me as she made a big "X" in the box) I never thought that 8 months post-op from brain surgery I would barely need an Advil once a week. I was just as scared of what I would need post surgery to keep me afloat, as I was about the surgery. I didn't want to live on prescriptions and have any addictions to pain meds/etc. and yea, I did it!
I DID IT.. big sigh, huge smile.. tons of gratitude.. all is well.
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| on the left you can see my syrnix (the white mass) and in the image on the right my spinal cord is open (the grey area is my spinal fluid flowing) |
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| some photos along the way -and bottom left: dr. oro taking one last look at my scar. |
