Tag Archives: chiari 1 malformation

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.

Blessings,

Alyson

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MRI Results are In – Not What I Expected.

When I was pregnant with Noah (wayyyyyy before his DS diagnosis), a friend and I were discussing whether or not I would continue childbearing into my 40s (I was only 36 at the time).  I vividly remember telling her, “I am so not worried about God giving me a child with Down’s.  I know He won’t give me more than I can handle, and I wouldn’t be able to handle that.  I would go to bed and just never get up again.”  Hmmph.  Well, I didn’t know as much as I thought I did – God did indeed give me a child with Downs, and I handle it, and I do get up every morning,albeit a little slower than I used to (but I’m thinking that’s just age).

Apparently I have not learned my lesson.  I didn’t think I had any emotion left for drama.  I was sure everything was going to be hunky dory on Andres’ MRI.  It’s not.  They found a Chiari 1 malformation that Andres’ pediatrician thinks is responsible for his headaches.  According to my brief research, it may also be responsible for his nosebleeds.

This place I am in this morning feels so familiar.  I remember it well when awaiting Noah’s diagnosis.  I can only research for small bits of time before it becomes overwhelming, before my brain starts shutting down.  I vacillate between “Oh my gosh this is major – our whole life could change” and “this is not a big deal, I’m sure he’s got it just a little, not a lot.”  Basically a Chiari 1 malformation is a herniation of the brain down into the spinal cord.  (I think.)  It restricts the flow of cerebrospinal fluid and can also cause pressure to build inside the brain.  But often times it is asymptomatic or causes mild symptoms that require no treatment.  Then there’s medication or surgery for more serious cases.

What I’m not liking is that Andres is already showing symptoms.  Most people with Chiari 1 malformations don’t experience symptoms until adulthood.  So why is Andres showing symptoms now?  Is it a bad case, is it progressive because he is still growing?

I’m encouraged because Andres hasn’t had a nosebleed in two weeks and it’s been longer than that since he’s had a severe headache.  He is still complaining of headaches almost daily, but they seem to be mild enough that they are not interfering with school and play.

You know what I dread?  The next time he has a severe headache.  When he gets “that look” in his eyes that tells me this is a bad one.  And in my mind I’ll know where this headache is coming from and why it’s hurting, that it’s not “just a headache.”  Fortunately ibuprofen seems to help him, and I’ll devote myself to him wholeheartedly while he suffers, just like I devote myself wholeheartedly when Noah is struggling.

I shared this info in an email to my family this morning, and the Lord reminded me to share with them the things I’m thankful for, and I am SO thankful.

Lord, thank you for our pediatrician and his sensitivity to call me himself this morning.  I love his nurse to death, but it meant so much to hear his voice this morning.  This is who I trust completely with my son.

Lord, thank you for MRIs, which just happen to be the best diagnostic tool for Chiari malformations.

Lord, thank you for good health insurance and steady employment for my husband.

Lord, thank you for a pediatrician who sent my son for a MRI instead of wanting to watch and wait.

Lord, thank you that You are sovereign and there is no place you will not go and nothing that you cannot do.  And I thank you, Lord, that your plans are always better than my own.  Thank you for gifts wrapped in strange packaging.

Blessings,

Alyson

Heard Around the Hen House – 01-31-2012

Andres (age 8):  “Now, that wasn’t a bit like getting shot out of a canon.”

The children have been having a ball the last few days prepping Andres for his MRI which was scheduled for today.  Didn’t know how seriously he was taking it all until he came out of it.  For a little boy who gets terrible headaches from even the briefest exposure to loud noise, he was amazing.  He kept headphones on while in the MRI and listened to music, he didn’t move a bit, the tech was able to get all the views she needed on the first try.   To top it off, Andres didn’t even get a headache.   Let me tell you, those things are LOUD!!!!  The tech gave me earplugs because I stayed in the room with Andres, but I wasn’t even in the machine and it was loud.

I’m not much for drama – I’ve spent my lifetime allotment of drama emotion in the past few years.  Plus I can’t even begin to comprehend what it would mean if something odd turns up on the MRI.  Andres has been having headaches, sometimes very severe, and they are increasing in quantity.  He also has recently started having nosebleeds for no apparent reason.  The doctor doesn’t think they are related, and he suspects complex migraines, but we all wanted to rule out anything more serious and make sure we have a handle on what the real problem is.  So, no worries, and I’ll update as soon as I have word.  We appreciate your prayers.

Blessings,

Alyson