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Chiari Malformation Community
5.18k Members
620923 tn?1452919248

List if u r a parent/grandparent

of a child with chiari.

We are trying to get the viewpoint of parents in dealing with chiari....it is hard enuff when u as an adult can not get the attention of the medical profession....but trying to get it for someone when u do not know what they r even feeling....must be a bit more difficult...do u have times of doubt?......do u have guilt?......do u feel u did enuff?

I know these can be very diff questions to ask...and I am sure u may even have a diff time communicating with ur child...as we all do in the teen yrs, but put chiari on top...it changes everything...so to help our teens on the forum.....we need honest answers......

If u could...jot it down as How we noticed chiari symptoms....and put it in ur journal here on MedHelp.


Please post a comment so I know who all my parents and grandparents of chiarians r : )

Thanks
"selma"
9 Responses
Avatar universal
parent
Avatar universal
parent
Avatar universal
HI Selma,

Parent
570413 tn?1299536261
I am a parent of two Chiari kids.  Wouldn't trade them for the world, but seeing my daughters living trapped in bodies that causes them pain is very difficult.

Occasionally, you do wonder if you did something to contribute to this.  Mostly, I grieve for the healthy bodies that they do not have, and for the lives they would be living if they did not have Chiari.

It is very hard, and some days seems unbearable.  Without the Lord's strength, I'd be lost.

I hope this is helpful, and I will be willing to help in any way possible.

Blessings,
Rebecca
707040 tn?1473948394
parent
620923 tn?1452919248
COMMUNITY LEADER
Hi all and thanks for letting me know who.....now I will need to interview u with questions like above...if u r ok with this PM me and I will get u the interview questions.

Thanks again for all ur help!!

"selma"
Avatar universal
I am the parent of two Chiari kids. My son had surgery when he was 11 and my daughter just had decomp surgery at 10 yrs of age. He recovered beautifully. He just finished his first season of football and has started wrestling. My daughter, on the other hand, is a 'worst case scenario'. She is reacting to her dura patch and has a bulge from a CSF leak with horrible headaches, neck pain, and back pain. It was a struggle to get them diagnosed, even though my sister had decomp surgery five years ago. I even brought this up to the NL's, but they poo-pooed me. Noone wanted to refer us to a NS, so I had to go into raging mother mode. We got what we needed, and I am confident that we will see resolution with our daughter too. I won't give up until she feels better. We will see a NL next week again and have been referred to a genetic specialist for Ehlers Danlos Syndrome testing. That appointment will be some time in December. Medicine is NOT an exact science. As long as we have someone willing to keep working to find what's wrong we will keep going to the appointments.
707040 tn?1473948394
Hi
my son also the surgery january 09 - and went back to wrestling. He started having problems with it and stopped again. Just wondering how you son is doing with it and how old he is, how long since surgery?  My son is 16 now and had 20 mm herniation.

Sorry to hear your daughter has had a tough time....it's a long battle. Good for you for continuing to fight for her!!
Sherri
620923 tn?1452919248
COMMUNITY LEADER
- How did u first notice ur  child's symptoms?
-did u recognize all the symptoms as symptoms?
-how long did ur have symptoms b4 u reported them to ur child's dror discussed with the child?

-How was ur treated when u explained ur  child's symptoms?
-by ur piers?
-by the drs?


-What did ur drs feel were causing ur symptoms?
-what testing was done?
-were u rx'd meds or PT?
-did meds or PT work?
-if so, how long?

-Were u able to discuss this with ur child?
-what were ur concerns?

-would u consider meds and PT already tried as conservative methods?
-how many different conservative things have u tried-time period?

-Did u ever feel like people considered ur child to be a slacker or lazy?
-how did this make them feel?
-do u feel alone?
-do u have guilt?

Please add the following line:
I __________________(ur name_) agree to participate in this interview, knowing the answers will be used in a online public e-newsletter by the name of Pain in the Neck.

Please copy and paste this in ur PM's and answer...then PM back to selmaS by
Dec. 7th.

Thanks you to all that r participating in this.
"selma"
Ray
Lizzy
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