Chiari 1 to the mid C-2 level in a 3 year old

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

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Chiari 1 to the mid C-2 level in a 3 year old

Postby piddmom » Wed Sep 23, 2009 12:13 am

Hello...

I have a 3 year old with gross motor delays, speech and swallowing problems, low tone and other health issues. We did an MRI on his brain to check for lesions (looking for possible mito) and was found to have a Chiari 1. The report and the neurologist state that the chiari is down to the mid c-2 level, but the neurologist couldn't give me a measurement in mm.

Does anyone have any idea how many mm this is? All the research I find talks about mm, and so I have no idea how "big" my son's chiari is.

We have an appointment with the neurosurgeon Oct 14th, but they are trying to get him in sooner.

Thanks in advance!

Missy
piddmom
 
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Re: Chiari 1 to the mid C-2 level in a 3 year old

Postby jupes » Wed Sep 23, 2009 9:27 am

Hi Missy and welcome!

You have found a great place to get accurate info and support! Check out the educational articles and look at the online videos that discuss CM in children too. I found this to be very helpful when my daughter was first diagnosed,

Not sure the size of herniation in mm but down to the c2 area would be a pretty significant size. Your NS or radiologist can measure this when viewing the films and give you a number in mm. More important than size is the amount of crowding in the posterior fossa and obstruction in CSF flow. Some people with very small herniations can have crowding and blocked flow with severe symptoms while others with large herniations can have mild symptoms. Specialists usually recommend a complete spinal MRI to check for a syrinx and other related conditions and a CINE MRI to check CSF flow. Has your son had these tests done yet?

Most important thing to do is find an expert NS who is experienced with CM/SM. There are not a lot of Peds NS experienced with CM/SM so many of us have had to seek 2nd or 3rd opinions and some of us have had to travel to find an expert. If you post what state you live in we can give you a list of some recommended experts.

Pray your appointment with the NS goes well! Keep us updated!

Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
jupes
 
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Re: Chiari 1 to the mid C-2 level in a 3 year old

Postby piddmom » Fri Sep 25, 2009 9:04 am

Thanks so much!

No my son Max has only had a brain MRI, when we go to the neurosurgeon I will ask about a spine MRI as well. The neuologist who gave us the results didn't know a whole lot about chiari (I kinda had to push a bit to see the neurosurgeon. He didn't seem to think down to C-2 was that significant, but we are having symptoms) The neurologist didn't mention anything about CSF flow.

There is only one peds neurosurgeon in the state, and I heard (from our immunology nurse) that he does some chiari decompressions but she saw a lot of infections with them.
Does anyone know if infections are common with Chiari surgery?

Thanks so much!

Missy
piddmom
 
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Re: Chiari 1 to the mid C-2 level in a 3 year old

Postby DCSTO » Sun Oct 04, 2009 10:43 pm

Hi,

My 9 year old daughter had the decompression surgery In Feb 2009. The surgery was done at the hospital for sick children in Toronto Canada, by a top pediatric neurosurgen and the surgery was a sucess. We were told that the infection rate of this surgery was the same as any other surgery which is about 2 to 4%. Hope this helps and I wish you all the best our prayers are with you.


Dominic
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Re: Chiari 1 to the mid C-2 level in a 3 year old

Postby piddmom » Wed Oct 07, 2009 2:25 pm

Thanks to all who replied!

My son has low white blood cell counts, plus neutropenia and low immunoglobilin levels, which put him at higher risk for infection. SO infections are a top concern if we need surgery.
We see the neurosurgeon in one week. HOPEFULLY we will get some answers....

Missy
piddmom
 
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