Wednesday, January 9, 2013

A Story About a Syrinx

Remember last August when Elisabeth was in Seattle Children's Hospital and everyone was clueless as to what was causing her pain? And the doctors had no ideas? And they threw in the towel?
And remember how I said over and over again that I thought we should do an MRI of the spine but they refused?
"We already know it will show abnormalities, so really it won't show us anything," they said.
Well...when I took Elisabeth to Salt Lake City in October I finally met with a surgeon who listened to me; a surgeon who thought logically; a surgeon who called the docs up here and said we indeed needed an MRI of the spine.
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And what that MRI showed was that Elisabeth has a syrinx which is a fluid filled cyst within the spinal cord. There are still a lot of questions regarding the syrinx: Is it the cause of Elisabeth's scoliosis? Or is the scoliosis the cause of the syrinx? Is it the cause of the pain?
Currently, the MRI results are being sent to Primary Children's in Salt Lake City so that they can review them and discuss an appropriate plan of attack with the surgeons here in Washington.
We are also going to be taking Elisabeth to see a surgeon about her scoliosis. We need to make a decision as to how to handle it. It is getting so severe that there is fear it might start to threaten vital organs. Of course, how we deal with the scoliosis will be determined in part by what we find out about the syrinx.
And once we figure all of that out, Elisabeth will be having surgery to place a VNS device (which is sort of a pacemaker for the brain) in her chest. Details on that soon!
There's a lot going on around here!
But busy is good, right?

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