Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Postby nicari » Wed Jun 22, 2011 1:14 am

Hi. Our 5yr old has Chiari 19.75 w/ no symptoms. We have met a surgeon at Seattle Childrens Hospital that specializes in Chiari/surgery. He said he feels more than confident to wait and watch her closely w/ yearly MRI unless symptoms should arrive. Then surgery. He does about 100 surgeries a year so we feel so lucky to have been introduced to this doctor...yet of course we are still so scared. I try to stay positive but it's hard (inside). I think often ( what if she has to have surgery and she never wakes up). I try not to think the worse, but it's hard. Looking at her little face & loving her SO much....I can't help worrying. I recently met someone who's mom had Chiari surgery back in 2004 and is doing great....well, occasional headaches just came back, but not bad ones. Any how, I was excited to meet her so that I could talk w/her about the surgery and what to expect (if our daughter needs it)...but also found out that she died twice during surgery and they had to bring her back. I was hoping that talking to someone about my fears and surgery may help make me feel better. Not so sure now. I haven't met this person yet. I know there must be success stories too. I guess I wish I could erase this awful worry I have. I feel so lucky though that our daughter has no symptoms. Doctor say's that Most likely she will have surgery sometime in her life though. I'm scared and so is my husband. Thanks for listening....just needed to talk and get this out.

Dannie'l :cry:
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Joined: Tue Jun 21, 2011 1:48 am

Re: Arianne

Postby Kate456 » Wed Jun 22, 2011 12:34 pm


Welcome to the board. Of course, we all wish you didn''t have a reason to be on here....

I sent you a private message. Look to the box on the right and click on the PM icon to read it.

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Joined: Tue Feb 08, 2011 3:53 pm

Re: Arianne

Postby lttutrow » Sun Jul 10, 2011 4:41 pm

Just thought I'd welcome you to this board. I'm so sorry to hear she's been diagnosed, but it sounds like you're already found a great neurosurgeon, and that's a big step in itself!
I think it's normal to be worried about the surgery, but if you have a good relationship with the neurosurgeon going in and trust is already established, this goes a long way to making the road ahead more easily traveled. I have two children that had the surgery six months apart in 2008. My son was 9 and my daughter 11. They neither one had complications during the surgery, I hope this helps to put your mind at ease! If there are any questions I can help answer, or if you just need to vent, feel free to message me anytime.
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