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info on tethered cord release

hello i had posted a few weaks ago.  our little girl is 31 mo.  she has a tethered cord and we know know that she will have to have surgewry to release it.   however it is next to impossible to acctually find info on the surgical procedure.  and pre op evaluations.  

do you know what type of urodrnamic studies are usually involved in checking for reflux and nurological blddier in a child my daughters age.  oh she also has a partial sacreal agenesis(she is missin S2,S3,S4,S5.  does this increase the chances of her have bowel and bladder problems?

second Dr.Francel at Oklahomas oklahomas children hosp has also ordered a mri of cervical and theraxic spine i  dont really know what else he is looking for other that a build up of fluide, oh he had said something about a particulare defect that if she had had to br released at the same time as spine it started with a d i think do have any ideas what else is associated with tcs envolving the spine?  can she become tanggled on hemivertabre that a a L2.L3 level after she is released?

one last quwstion with her age and given that she is tethered due to a spinal lipoma in the filum, termane once the lipome is removed or the cord is released do they come back and do you now about what percent get reteathered she also has scoliosis she is at a 27 degre angle?

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Avatar universal
Dear Hanna:

Sorry that you have to ask all these questions, your surgeon should be the one answering these for you.  The lipoma in the spinal cord is an indication that secondary neuralation was abnormal.  This is confirmed in the congenital abnormality seen in your daughter.  In 100% of disorders of this type the filum and conus of the spinal tract are abnormal.  The lipoma should not return once it is removed.  Scoliosis will be a life long problems with the need to carefully watch your daughters scolosis as she grows.  Surgery to keep the back straight may have to be performed, but only the neurosurgeon can tell you when, and under what circumstances as only he/she knows the compromise of the scoliosis is having on your daughter.  The pediatric urologist can better tell you what dynamic studies are best in your daughter as he/she has seen the films and done the initial examination of your daughter.  Many children with this type of disorder have bladder problems.  I would imagine a VCUG would be the initial test.  The surgical techiniques involved depend on the extent of the lipoma and congenital abnormality, and the neurosurgeon knows this best and can tell you the procedure he/she recommends.

I am sorry I can't help you more.

Sincerely,

CCF Neuro MD
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Avatar universal
katie is also going to have a ABR done due to her  of verbal auditory agnosia,,  i was woundering what kinds o fthings can be rulled out or idebtified by a ABR test could it give us a good idea of what her hearing is like or why she is having problems in localization in her right ear oh also she has a siezure disorder can breath holdind siezures cause problems with language developement she has had 3 normal eegs but her nuerologist lastime was talking about LKS due to a stop of language development and the agnosia which developed after her first sieze could this be possible with a normal eeg?
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Avatar universal
Dear Hanna:

Landau Kluffner syndrome should have an EEG finding, especially during sleep.  If the EEG did not show sleep, then this is problematic and should be repeated to include sleep if this is expected.  Breath-holding and subsequent seizures due to the breath holding spell should have no impact on language.  If the seizure event occurred after the breath holding spell, it was likely due to the breath holding spell itself.  If a seizure event occurred at another time, this would be a different story and would need to be pursued.A BAEP test lets one know about the integrity of the nerve connections in hearing.  It can be a problematic or difficult test in youngsters as normative values are sometimes lacking in a particular lab doing the examination.  Your pediatric neurologist should be aware of this and therefore not a problem.

CCF Neuro MD
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