Hi, my daughter cameryn just got diagnosed w/ chiari malformation 3 weeks ago, she is getting surgery next week, opening the dura, taking the back of her 1st vertibre off etc. Anyone go threw this w/ a6 yr old? She was put under anestesia tues for her MRI, and exprienced emergence, which was horrible! Has anyone else went through this and their child woke up ok? I'm sorry but I'm just a mess! Worried about the recovery and how she will wake up after surgery! Any advice would be great, please no negative comments for I can't handle it, thanks I just need some feed back on how other mothers deal in this situation & what to expect, thanks and sorry if I'm repetitive!

Nicole - posted on 10/06/2011 ( 1 mom has responded )

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I just wrote my whole story in the subject line!! Shesh, anyways my 6 yr old daughter just got diagnosed w/ chiari malformation 3weeks ago! Her syrinx is 12 vertibres, the docs @ Hopkins told me she's a miracle she has no other symptoms besides scoliosis which we just noticed! She is getting surgery next week, opening the dura, taking the back of the 1st vertibre off, etc. I was wondering how other moms out there cope w/ this and the recovery ect.. Basically what to expect?? She just got another MRI that she had to be sedated for and had emergence while waking up? My worry is could this happen again after surgery? I talked to doctors, the chiari malformation foundation ect... But not any mothers whose child went through this do if anyone can give me some advice or just to talk cause I am a mess and I'm strong around my daughter but when she's at school my mind goes nuts? Please any advise would help set my mind at ease! Thanks so much, Nicole

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Sandra - posted on 01/06/2012

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Hi,Nicole,Hope your daughter is doine fine after her surgery.my grandson had his second operation for the same thing in Dec 2011.he had his first in 2003 at 3 wks.hes doing great now. His recovery was really fast after both of those surgerys.You would never know to look at him that he had that surgery.he also has spina bifida and has had 37 surgerys to replace his shunt for the water on his brain,but god takes care of him,Hes really smart and very loving. I thank God for him every day

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