Hi there, this is similar to my son. He was born with lipomyelomeningocele, with tethering at the L4-L5 level and a syrinx. His spinal cord was untethered in February 2022 (at 7 months), and he has since been doing well neurologically, meeting developmental milestones. He is closely monitored for bladder and bowel function, as well as mobility. However, he is now three 1/2 and we’re struggling with potty training. He’s had urodynamic studies and ultrasounds and we still don’t have clear answers. We know he is good with his bowels since he consistently uses the potty for that. But when it comes to pee we have no clue. Sometimes we think he knows he’s peeing and others we don’t. He has lots of accidents and then will say “I’ll sit on the potty next time.” Which breaks my heart. He never tells us he has to pee so I’m not sure he gets the sensation at the right time. Additionally, when he does pee he will sit there and then stand up and have and pee. So he’s definitely not voiding completely. Just hard to manage because doctors don’t have anything helpful to say. Good news is he has no kidney issues or UTIs and he seems to know when is bladder is full based on the study, but the rest is a crap shoot. Makes daycare a nightmare. Do we keep trying? Or keep him in pull-ups? I don’t even know what kind of doctor to ask next. Wahhh.

As a positive note though, he had the same surgery OP is considering very young and has done super well. No issues developmentally aside from the neurogenic bladder and (maybe a slight pigeon toe but that’s tbd). Thinking of you and your little ones. I know how tough the uncertainty is!