Wish I found this site sooner

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Wish I found this site sooner

Postby cari » Thu Nov 04, 2010 9:24 am

Not sure where to start. My daughter was diagnosed with Chiari at age 3 when she fell off her father's shoulders and fractured her skull. The NS told us that her fracture would heal just fine but then told us that he found "something else." I had never heard of Chiari and didn't understand what it was. Further, I was so ignorant and full of denial that when the NS asked us to schedule a second MRI six months after the first one, I didn't do it. I didn't want to put my daughter under anesthesia again, so I just made a decision to it every other year. Very bad decision. Thankfully though, her NS called me!! He wanted to know why I hadn't done the second MRI and was very firm about the importance of it. Looking back, I was so fortunate that the NS we got by luck turned out to be a dr very aware of Chiari. I will never forget this man. I have since read so many stories of frustration of agony from misdiagnosis.

Though my daughter still didn't show any symptoms, the second MRI revealed extensive syringomyelia running the entire length of the thorasic area of her spine. We got 2 other opinions before having decompression surgery in August 2010.

Most of what I know now came after the surgery. I have learned so much about how to use the internet to research her condition, doctors, surgery procedures, etc. I read all the articles and publications I can get my hands on. I now routinely ask for copies of the radiology reports. I find that most people do not understand. They have the demeanor of "she had the surgery, so she is cured." I think because she looks and acts fine and still isn't displaying symptoms, friends and family don't realize how it weighs on my mind.

I am glad to have somewhere to go where I can share with others who understand.
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