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Hmmm, where to start? Well, it was a pretty shocking moment to be told my seven year old son has a potentially life-altering condition. The condition is called Chiari Malformation with Syringomyelia (a.k.a. CM/SM). It is a malformation (from birth) of the cerebellum (the lower base of the brain stem) wherein said cerebellum projects a little too far into the top of the neck. This puts excess pressure on the spinal chord, causing the flow of spinal fluid to become obstructed and diverted into odd places. My lovely wife thinks I'm getting too technical here. (Back off, honey, I don't see you writing anything for this site...yet! :-)
Basically, Jaden's doctors are confirming what we've suspected all along - that his fat brain is too big for his thick skull. (There's my less-than-technical description of the problem.) Unfortunately, it's a pretty serious situation that required surgery. Fortunately--and we are learning to count our blessings here--improved technology in diagnosis, treatment, and outcome with young Chiari patients over the years helps us to be hopeful that his symptoms won't get any worse. We are praying feverishly, and appreciate the prayers of all those who know us and/or come across this site. Many prayers have been answered already. As I update this page to put his surgery in the past tense, he is completely symptom-free and scheduled for a follow-up MRI in August 2004. Stay tuned here for updates. I've tried to wade through the vast amount of information available on the Internet and summarize it here for the benefit of friends and family. (Diane's page is, no doubt, forthcoming. Right honey? Diane? You there?) What is Chiari Malformation? No, there is not a newly discovered body part called the "chiari" that is malformed! Chiari is the doctor who first identified this type of malformation at the base of the brain. The "syringomyelia" part of the name refers to frequently found "syrinxes" or cysts (very much like blisters), which are filled with spinal fluid and found along the spinal chord. The CM/SM comes from Chiari Malformation (CM) with Syringomyelia (SM). It's possible to have CM without the SM--in fact, that a good thing, since the syrinxes form as a complication of the malformation. Jaden's syrinx unfortunately occurs most of the length of his spine, although it shows more clearly on the MRI near the top. The syrinx puts pressure on his spinal chord, causing the various symptoms that led us to take him to the doctor. He initially twisted his ankle, causing him to walk with a "drop foot" action. I brought him to the ER where they took x-rays and told me that is was not a fracture, and that the problem should go away after the swelling went down. It didn't: the swelling didn't go down and the drop foot problem didn't go away. We took him in for another series of appointments, which all seemed to stump the doctors at first. They fortunately had the experience to know that something deeper was causing this problem and referred us, first to a neurologist, then to a neurosurgeon.
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