Key-R-Ee

B has something called a chiari (key-R-ee) malformation.  I imagine that most of you who read this blog are aware of this-- we found out last March.  After a long December and January with B head banging and unhappy, we began actively trying to find out what was going on with the little guy.  We saw our pediatrician who thought that 'frankly, it was weird.  But probably, normal?' It continued.  We pushed harder and bought ourselves a psych consult. At first I really resented the consult.  I kept suggesting we needed imaging done.  I wanted to make sure there was a huge tumor growing in his brain, causing bad headaches with subsequent head banging in the middle of the night.  Our pedi reasonably pointed out that we had already had an MRI done as part of a research study in which the boys were taking part.  Surely, they would have said something if there had been something to see? Right?  

As it turned out, the psych consult was helpful.  Not because they uncovered any diagnosis but rather, the principal investigator of the research study was a member of the psych department.  Our psychiatrist inquired about the previous image and lo, I received a phone call from the investigator a few days later.  'Uh, there was something on his MRI.  He has a chiari.'  There are different forms but he has a chiari I which is a herniation of the cerebellar tonsils past the foramen magnum.  This means there is a small portion of his brain that extends out of his skull into his spinal column.   This can be troublesome because it can cause the spinal fluid to get backed up, affecting the spinal cord and causing other problems.  Some people have it without any symptoms.  It is just a finding but with no clinical significance.  Others have a lot of trouble: headaches, choking sensation, decreased arm/hand function...  

We saw a pediatric neurosurgeon shortly thereafter who examined the MRI carefully.  We had another set of images of his brain and spinal cord taken to see if there was any blockage.  B has a large chiari (in terms of the length the brain extends down) and while the flow looked to be diminished in the back of his head, it wasn't enough to warrant surgery.  We were partially relieved, brain surgery is no joke.  And yet, he was obviously having troubles at night still.  Waking up, head banging, crying and no being able to go back to sleep.  It would come in bursts and then get better.  A miserable month, a couple weeks reprieve.  It sucked and still does.  But we were in a holding pattern, until there was more concrete signs that surgery was indicated, the surgeon wanted to hold off.

B had another MRI and follow up appointment last month.  Things are looking cramped back there.  His brain is growing normally (as evidenced by his language development, his social skills, and his normal progress) but his little noggin isn't keeping up.  We had another MRI the week after next.  From there, we will decide whether or not we need to surgery.  In the midst of all of this, B has started getting up again every night.  It generally takes him two hours to get comfortable and fall back asleep.  This happened most of November too.  Meh. It makes the caffeine requirement steep and the bleary eyed mornings numerous.

I suppose in the course of these types of things, one needs to go through this process to come to terms with having their child undergo a surgery.  If it weren't so rough, and he wasn't in so much distress, then it would be difficult to justify opening his skull and exposing his brain to all sorts of scary infections.  But balanced with the possibility that it might bring him relief and the chance to sleep, not to live with constant headaches and to continue to develop and grow normally, it seems less radical.