Urological Issues related to TC

November 10, 2007

I have a 16 mo old daughter. Her tethered cord was found when she was

8 weeks old. She had other more pressing issues like a major heart

defect that required two surgeries, so we are just now getting

clearance to address her tethered cord. We have never really had a

good neurosurgeon to explain anything specifically about igh but

from what I have gathered from her medical records- she has a terminal

filum. Just recently - in the past 3 months- she has started having

bladder spasms and after her VCUG we found out that she has a

neurogenic bladder and left kidney reflux. We are thinking this is

related to the TC and now her neurosurgeon wants to move our

appointment with him closer. He also asked that we not close her

colostomy before we see him on Dec. 5 / 6.

I have several concerns. I have heard differing opinions about

whether lost bladder function will return after the de-tethering or

have we waited too long and done permanent damage. She also has a

battery of other neurological symptoms. Will those improve after the

surgery?

We will be seeing Dr. Frim in Chicago. Anyone have experiences

with him?

I am extremely worried that we have waited too long to address this

and that we may end up cathing for the rest of her life.

Any input or experiences would be very helpful!

Amber

Wife to Troy, Mommy to Owen, Ross, and igh -16 mo- Single

Umbilical Artery, VACTERL Association - Tethered Cord- Terminal Filum,

Cardiac - AV Canal, Congenital Heart Disease, VSD, Murmur, Tracheal

Bronchus, Reactive Airway, Neurogenic Bladder, Left Kidney Reflux,

Colostomy placed at 42 hours old, Open heart surgeries 2/23/07,

3/10/07, PSARP 8/14/07.

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