Andres – Chiari 1 Malformation Update – Info Needed

Yesterday was a discouraging day.  We loaded up the car and drove the 15 minutes to pick Trinity up from work, then to the grocery store, then back in the car and home.  By the time we exited our vehicle, Andres had tears streaming down his face from the pain in his forehead.  I have not seen him in tears since before he had the surgery.  It is a crushing blow to see him in more pain now than he was in then.  He proceeded to lie down and he fell into a very deep sleep.  When he woke up an hour later, he felt much better.  It is the bumps during our driving that cause him the pain.  I don’t understand the why, though.  We had friends over for dinner last night, and the children were running around and having a ball, and although Andres did lie down at one point for a few minutes, it certainly didn’t cause him any distress.  Maybe the intense heat in the car makes it worse?  For those of you who have had or your children have had similar surgery to his Chiari decompression, please fill me in on what is going on and just what I can expect recovery to look like.  Is it going to take some time for Andres’ brain to settle into his new space in his skull and should we expect that to be a painful process?  Is the way he feels now an indicator of his new normal – gasp!!!!

I know, I know, I should ask the neurosurgeon, but let’s get real folks.  Those doctors may know what he looked like in surgery and what hospitalization looks like, but they are not the ones who are spending time around the clock with these patients.  I know it’s you moms who have the answers.

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3 thoughts on “Andres – Chiari 1 Malformation Update – Info Needed”

  1. I am so sorry he is going through this! Right after her surgery, Brooke through these horrible fits. She was only 4 and did not know how to tell me she hurt! I literally thought my daughter was possessed! It was only when we were out and about and towards the end. She would just wear out so quickly, and melt down. Her head was hurting and she needed rest. If i would take her in a quiet room and rub her head she would relax. We see them bounce back after surgery and think “wow!” But their little bodies have been through so very much, brain surgery! It is so hard for us mamas to see them suffer. I would definitely give him some time to heal. You will learn hi triggers, and if he says enough you will know. If it becomes a constant thing or making normal life impossible, I would see your doc to check pressure in his head. After a while we found out that Brooke had the Cranial instability. She now has to wear a collar in the car. This way her head does not bounce around. I will try to attach the posts from my blog that deal with this so you can read how she was acting. Also if you are on fb I would be glad to invite you to an online support group. Hugs! The first few months after surgery were the toughest and then she learned what was causing her hurt.

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