Chiari Online Support Group

Surgery finally scheduled....looking for advise

#1

So after a year, my 12 yrs old daughter has finally been scheduled for decompression surgery. Her chiari malformation is 14mm and her syrinx is from her C3-T1. Any advise would be great. We are all very nervous and hope this surgery makes her feel better. She has missed the whole year of school and has hurt nearly every day…we are just praying for some relief for her.

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#2

well prolly not the advise you are looking for as the practical stuff will come from her nursing team, therapists etc. They KNOW whats up trust them (more so than the docs who are usually detached from recovery)

I will offer some “parenting advice” though, based on many years ofbdealing with my own kids and grand kids who have suffered a multitude of maladies and chronic illness

All any parent wants to do is smother their kiddos with as much love and caring as they can - as they should. BUT you still need to be the tough guy from time to time. Its really not much different than having to discipline a child. You hate to do it but know it needs done.

Hold her accountable for her actions and attitude. The last thing you want is a perpetual victim and the inevitable whining that comes. She has to do the hard stuff - moving therapy etc, or there is price to be paid. Or she can become a small napolean controllin the family and everyone in it (not on purpose it just happen) Keep an eye on siblings and make sure they have “mom time” lest they become resentful

Schedule! Schedule! Schedule! Its more important than ever.

Let her be a baby despite her rigorous schedule for recovery. A close stuffy with her for appointments etcis a big help. It can bcome her best friend.

Keep you concerns and fears to yourself - even if valid. You don’t want to scare her ever.

Don’t let her become isolated. Play date and friends are a good thing (in measure and under control)

Better to push hard than not hard enough. You know her, trust your Mama Bear instincts. She is YOUR child. She is also stronger than you think and kids for some reason are stronger through this stuff than the parents

Take care of Yourself above all. Its a long haul. Get help, so you take time for yourself. Even just buying groceries or a walk through the mall will reinvigorate you.

Talk to some one counselor pastor friend etc. Make sure YOU aren’t feeling any guilt. Parents to often in some way blame themelves for these things and question themselves

There is a big reward through all this. Your bond and her trust in you will grow stronger than you can imagine and row even more after recovery. Those teen yearsare not far away.

One medical thing. Get close to her Pediatrician. Puberty is especially tough with girls. Chance are good with brain chemistry changes from her treatment it will hit harder and faster (even if she has started) or stop. She will be terrified either way - are all these changes something going wrong?. Educate Educate Educate

Stay in touch with us. We know, we understand, we care.

Oh one last thing let her have some caffinated soda if okay with her doc. It will help with tha pain (or make her smile at the treat)

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#3

Thank you for the advice. I do try very hard not to be too easy on her. It kills me to be firm with her but I don’t want her to grow up with the mentality that she is a victim. She is a very strong 12yr old and i want her to learn to deal with anything that comes at her and let the experience make her stronger. I believe God does have a reason for everything that goes on , we just have to be patient to find out what those reasons are…that being said…i do try to tell myself the same thing. I often try to figure out if i did something wrong while pregnant with her, didn’t eat right, didn’t get enough sleep, worked to hard…idk…nothing adds up and the Dr’s have said that there is no reason for this to happen …it just does sometimes…i will just continue to pray

#4

Your Doctor is right!!! I know how hard it is to deal with that guilt (even though my kiddos are adopted). But clearly you are a great Mom and your daughter is very lucky to have you. Looking back does no good and accomplishes little. Its getting to “tomorrow” that matters. Even buying groceries is a victory. all the little victories add up. You know what I liked better than anything? That occasional middle schooler meltdown that had nothing to do with Tana’s condition. that little bit of normalcy was precious.

TJ

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