As I wrote in my previous blog that both of my children had the decompression surgery for ACM, I also wanted to write that they both recovered without any long term effects.
While the surgery was not easy to endure from their prospective or mine, I am happy to report that both children fully recovered and began their new life without pain. As a parent, I can't describe how I felt to watch both children transform from being in severe pain and bedridden most of the day due to the pain, to running, playing and being "normal" children again! While they still have an occasional headache, the only tell-tale sign of their condition is the six inch scar down the back of their head, but their hair hides that.
Chiari One Malformation does not go away, but the pain and symptoms are alleviated with surgery. There will always be a chance that they may have to have the surgery again, if the cerebellar tonsils grow back but for now, eight to ten years later, both children are doing great and leading normal, productive lives! I might also add that both also graduated at the top of their classes and are currently enrolled in or have attended college.
For more information about Arnold Chiari Malformation, please go to: http://www.chg.duke.edu/diseases/chiari.html
Duke University has been researching ACM for many years and have a special interest in families that have two or more children with ACM.
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