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.
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:
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.
Copyright 1994-2016 MedHelp International. All rights reserved.
MedHelp is a division of Aptus Health.
This site complies with the HONcode standard for trustworthy health information.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.