Friday, September 16, 2011

9/16/2011 - A Summary

It was recently mentioned that if you have not followed from the beginning that figuring out "the basics" of what is going on could be a little overwhelming.  So I wrote the following summary of Sam's situation and surgery.


We discovered that Sam has sleep apnea almost a year ago.  This past spring it was determined that instead of obstructive (the common something is blocking your breathing) he had central apnea (your brain fails to tell you to breath).  This is rare in children and non-existent in healthy children.  This and some other things the neurologist noticed prompted her to send Sam for an MRI.  They found 3 things. 

1)      A Chiari Malformation – this is where the tonsils in the back of the brain hang down too far and descend below the skull.
2)      Some skeletal abnormalities – his skull is small and slightly misshaped.
3)      A basiliar invagination – This is when the top of the spine “pokes” into the brain stem.

These things together were causing a great deal of compression to Sam’s brain stem and causing it enough stress to result in the central sleep apnea.  The doctor indicated that it was likely this already caused some permanent damage (ie- Sam’s really bad and uneven eyesight, speech delays, some motor delays when he was younger).  Most doctors indicated that they could not believe the child sitting in front of them was the one they were seeing on the MRI, and that he should have already been way worse off.  The major concern was that to leave it as it was it would continue to pressure the brain stem and cause further damage.  The most significant risk was that given more time or the wrong bump to the head, Sam would lose his ability to swallow or breath on his own.  The doctors (many of them) agreed that it was very dangerous to leave this untreated for any amount of time.

The surgery Sam had included:
1)      Traction – to pull the spine out of invading the brain stem.
2)      Cervical fusion – fusing his skull to a cervical plate in the position the traction achieved so the spine would not sink into the brain stem again.  This results in Sam having lost about 90% of the side to side and up and down rotation of his neck.
3)      Brain Decompression – They shave off the bottom of his skull to allow more room for the herniated brain that hangs down.
4)      Duraplasty – They cut a small triangular section of the back side of the skull out to provide even more room when the decompression is not enough.  This is the real “brain surgery” part of it as it meant that the brain needed to be separated from the membrane surrounding it.  They then cover the exposed area of the brain with a protective membrane.

He is recovering pretty well.  Sam has to wear a hard collar for the next 3 months while the fusion heals and bone grows around the titanium hardware they placed.  I know that we will probably come up on some more emotional hardship for Sam as the reality of his loss of mobility sets in, but we are taking it day by day and it is going as well as I could expect.  We thank God for protection of Sam's brain up until now, that we found the condition before it was too late, and for the success of the surgical intervention, and pray that Sam would continue to heal well, and that God would use this as a blessing to Sam and others.

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