Many kiddies with RTS have something called a tethered spine. If I understand correctly - it simply means that their spinal chord is attached to the spine at some point - which it is not supposed to be. It can result in neurological problems in legs and badder and cause other things that I can't remember. Matt had an MRI scan when he was 1 years old and the radiologist reported that he had a low lying spinal chord but it was not tethered. Recent posts on our RTS support group have made us realise that a low lying chord could be an indicator that it is tethered, although it may not be obviously so. The neurosurgeon confirmed this but was hesitant to rush into surgery in case it wasn't. So more investigations are required - firstly by a urologist to check how well Matt's urinating is working (not sure what that entails yet) and possibly another MRI to see what his spinal chord is up to now that he is older.
Hopefully with these further investigations the shades of grey will be replaced with more clarity. I just hope the investigations are not too intrusive or uncomfortable for my little man.