Living with Chiari and a Second Surgery for My Daughter

I hadn’t planned to devote multiple blog posts to this issue, but here I am. Another late night, my mind racing on this issue. Writing is generally my best cure for this situation. Well, it was determined on Monday this week that Skye, my daughter, will definitely undergo a second Chiari decompression surgery at the end of this month.

Interestingly, she has developed tiny bony growths on her dura, possibly playing a role in why her symptoms returned a few months after her initial surgery. We are not sure why this happened, and we won’t know the details of what is causing the Cerebrospinal fluid (CSF) blockage until she is in the operating room. It could be a thickening or scarring of the graft on her dura from the previous surgery. It’s all speculation at this point.

Interestingly, my wife found this article, “Does The Type Of Dural Graft Material Matter?” at ConquerChiari.org. Check it out. Well worth reading if you have had the surgery or are contemplating it.

As I mentioned in my previous post on Living with Chiari, I went with an autologous graft, meaning my own tissue harvested from my thigh. It hurts for now, but seems to have the highest success rate in this procedure and I’m feeling okay as far as that goes. My daughter’s surgeon prefers to take a different route; he’s the expert, one of the top in the country, so I’ll trust his opinion and that all goes well for Skye.

My one request to all parents reading this: don’t ignore your child’s complaints of headaches or any myriad of symptoms that seem to occur on a regular basis. Sometimes those daily tummy-aches could turn out to be something serious that is fixable before it becomes a major problem. Sometimes it’s nothing more than a minor food intolerance, but it’s best to know whatever the cause. Your child will thank you for it in this future.

Trust me on this, I went through a lifetime of odd issues like poor ability to play sports due to my unwieldy coordination, my strange speech patterns in which I need to pause to force words out mid-sentence, and the many pain symptoms that were generally written off as growing pains and the always fun to hear, “you’re too young to have problems.” Turns out they were congenital issues and very real – early Chiari symptoms as well as a patella-femoral mal-alignment in both legs that developed into arthritis in both knees. Fixing these problems before adulthood would have been life changing on so many levels, but I can’t go back.

I am pushing forward, though. Skye is pushing forward. So should you.

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