Chiari 1 Malformation – Austin Area, Texas

Well, I told Andres to go brush his teeth this morning.  So he says kind of hesitantly (so I’m thinking he’s fixing to try to get out of brushing his teeth) Mom, it makes my head hurt REALLY bad when I swish and spit.

Nothing significant, right?

Well, in reading the symptom list of people with Chiari 1 malformation, the Chiari-specific headache is made worse by coughing or the valsalva maneuver.  The valsalva maneuver is basically when you hold your lips closed tightly and try to forcibly exhale, thereby creating internal pressure.  Sounds a lot like what happens when you swish and spit.  Sigh.

I called my pediatrician and will go by this afternoon and pick up a copy of the MRI report.  There are a lot of questions I have, and I’m wondering how many of them I can get answered by looking at the MRI report.  I’m sure for most of them I’ll have to wait until the neurologist sees Andres in May, but hey, I’m grasping at straws here.

Andres is complaining of headaches two to three times per day now, but it’s funny, because it doesn’t seem to be bad enough to make him want to lie down.  I think he has modified his activities without realizing it, though.  He’s not jumping on the trampoline or running around the house like usual.

I’m trying like mad to find a local parents group of kids with Chiari 1 malformation.  There are some national internet groups but not what I’m looking for.  So, bear with me if I have some very uninteresting titles to my updates on Andres.  I’m fishing a little for other local parents who are going through this with their children, or, even better, parents who have already been through this.




2 thoughts on “Chiari 1 Malformation – Austin Area, Texas”

  1. That means his symptoms are increasing but not intensifying? Very interesting. With everything else on your plate, do you have time to do an Andres journal, noting how he is each day? Might come in handy down the road. Ahhh…could Andres keep his own journal? Bring him into the process. Have him note each time, then check a column for intensity, 1-5? Just a thought. Ma.

  2. You betcha I’m keeping a journal of symptoms. Well, I should clarify. I don’t need to journal his headaches because they are daily, but I will journal his bad headaches and nosebleeds and any other symptoms that don’t occur daily. It would be good for him to note the intensity, but I don’t want him to focus too much on the pain, so I’ll have to think about that.

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