TCS - Duplicate post

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

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TCS - Duplicate post

Postby joeysmom » Tue Apr 15, 2008 12:43 pm

Ok, here I am again with some questions for those familiar with TC. We saw the NS today for my 9 year old son. He has been having back and leg pain so they re-ran spinal MRI's last week. We were told his conus is a bit low. It ends at the bottom of the L2 vertebrae.

The report states this: "The conus medullaris is again within normal limits in position at the level of L2. While there is no definite fatty infiltration of the filum terminale, there is slight prominence of the filum terminale as it extends into the distal spinal canal on the axial T2 weighted images with fat saturation. There is no evidence for intraspinal mass lesions. Opinion: the question is rasied of slight thickening of the filum terminale."

Our NS has recommended surgery but he said that there is no clear cut way we can tell if it will improve his symptoms. Joey does not have bowel or bladder accidents but he does have urgency. Our NS said we can wait and see if he develops accidents but we run the risk of them being permanent. So, my question is at what point did you know it was time to do the surgery? I know you do not have a crystal ball, but how do I know this is the right thing to do? I know there are risks of doing the surgery but there are risks of not doing it if indeed he does have TCS.

Also to note the cervical report states that he has "downward bulging of the cerebellum into the suboccipital region without change". This has not been mentioned on any other MRI report since his PFD. So, is it possible that a TC could pull down his cerebellum but not the brain stem? Or is this just surgery changes and therefore "normal"?

Our NS left us with these options:
1. Surgery for TCS
2. Wait 6 months and recheck
3. try biofeed back
4. do EMG and urodynamics studies (with the understanding that these will probably be abnormal anyway due to his SM).

Any input would be greatly appreciated.

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