New here with questions about new symptoms...

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

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New here with questions about new symptoms...

Postby melwall » Sun Jul 01, 2012 9:17 am

Hi,

My daughter is 5.5 and was diagnosed with Chiari and an spinal arachnoid cyst in April of 2011. She had the arachnoid cyst removed in April of 2011 and the decompression surgery in June of 2011. Thing were going very well and we really saw a big change in her last summer. The past 2 months though she has been complaining of neck and back pain a lot. She actually asked me if Everyones head and neck hurt all the time like hers did. The past month we have seen she is wetting the bed on average 4 times a week, where before if was maybe one random accident a month. She has been night trained for a year and a half. I am very worried and we have an MRI for the 16th. That was the earliest they oculd get us into due to her other medical issues. The NS said that if we have any other issues to take her to the ER. I also have been doing lots of reading and seeing that sleep apnea is very big with Chiari paitents and am worried that could be going on and causing the bed wetting out of the blue. She also has seizures with most of them going on at night. Was wondering if this sounds like her bone is growing back. How common is it for kids to have/need multiple decompressions?

Thanks so much,

Melissa
mom to Em....
melwall
 
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Re: New here with questions about new symptoms...

Postby lcolangelo » Mon Jul 09, 2012 8:34 pm

Hi-- sorry to hear your daughter is going through so much-- it isn't common for bone to grow back-- but it does happen. It has happend to my daughter 5 times-- and my son twice==although we have been told it is very rare-- we see Dr. Menezes in Iowa-- who is know world wide for being a chiari expert and he said it has only happeend to him 3 times in all his years- and 2 of them are my children. I wish you luck with your daughter-- let us know how the mri goes.

God bless
lisa
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Re: New here with questions about new symptoms...

Postby melwall » Sat Jul 14, 2012 6:00 pm

Thanks Lisa,

Wow, I can't believe how much both your kids have gone through with this. I am glad to hear that it's not that common but sorry it has happened so many times to your kids. When your kiddos had the decompression the first time did they do the duraplasty. Em did not have that, could that be a problem? MRI is Monday and am getting very nervous....

Melissa
melwall
 
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Joined: Wed Jun 27, 2012 4:45 pm

Re: New here with questions about new symptoms...

Postby lcolangelo » Tue Aug 07, 2012 10:30 pm

HI
Sorry-- I dont get on much-- no the first time they did not do a dura-plasty-- after that it was just boney re-growth. How did the mri go? Any news? Thinking of you..;.

Lisa
lcolangelo
 
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Joined: Fri Mar 21, 2008 1:50 pm


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