Chiari/Tethered Cord

My daughter was diagnosed with Chiari Malformation (due to balance issues) in November of 2007 by a radiologist and confirmed by a pediatric neurologist. In January we saw a neurosurgeon who disputed the diagnosis (we weren't wanting surgery for that anyway - just a diagnosis). Then we had an MRI of the lower spine done due to issues with incontinence, leg pain and weakness. That MRI came back showing the conus to be abnormally low (lowest part of L3) and suspicious for tethered cord (no fatty filum). She has urodynamic testing scheduled for the end of April, but the neurosurgeon has already said it will have to show substantial abnormalities before he would consider surgery on her.

She has had incontinence issues since she was 4 (she potty trained easily by the age of 2 1/2). She is now 8 and has almost daily bowel and bladder accidents. Along with that and her leg pain, weakness and the MRI findings, wouldn't that be significant enough for the doctor to think surgery would be warranted? Could she have permanent continence issues if we don't act quicky? Her continence issues seem to come in spurts as well - could they be connected to her growth spurts (pulling on her spinal cord as she grows)? If so, would the urodynamics show inaccurate results if she in not going through a growth spurt at the time of testing? Or will the urodynamic testing give us solid black and white answers instead of more grey?

Also, should we assume she does have Chiari because two professionals told us or do we go with the neurosurgeon's assessment? We are confused on whether she actually has these conditions or not.

Thanks, Kelli D.

[jjb419]

Hi Kelli D.
First, is your daughter flexible?
I ask because Chiari is common with a connective tissue disorder called ehlers danlos syndrome. I have EDS and there is a chiari in my family.
I think tethered cord is associated with chiari.
Here is a link to the Chiari institute:
http://www.northshorelij.com/body.cfm?ID=6407
There is a ton of great info there including videos.
There is info on tethered cord as well. If she does have either or both, these are the folks to see.

[KelliD]

Thanks, I am already familiar with TCI. I would like the opinions of others outside of the TCI community.

Thanks.