It looks like surgery is the only way. He has a Chiari Malformation that is causing the syrinx that is causing the scoliosis. The syrinx is huge! It runs the length of his spine. Simon doesn't want to have surgery and I can't blame him. Who would? It sounds like they'll cut out a portion of the skull, remove C1, and cut open the dura. Everyone confused?
We are going to go get another opinion but we just talked with a doctor that has pretty good credentials. He went to John Hopkins.
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Holy crap Ellen!!! Wow... I'm sorry to hear he has to have surgery but happy that there seems to be a solution? Anyway, when will it be? Are you nervous?
We don't know when it will be yet. First we have to meet with the next doctor and that appointment is on the 21st. I am sure we'll schedule right after we decide what hospital to go to.
Of course I am nervous. I am scared shitless. They are going to open the covering, the dura, that encloses his brain and spinal cord!
I found this site as well yesterday after we talked. You may have already seen it; but it looks like it has a good pictorial explaining the surgery (based on what you said).
http://cpmcnet.columbia.edu/dept/nsg/PNS/ChiariMalformation.html
We love you!!!
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