Has anyone any experience of tetered spinal cord?

[normansmum]

DS3 (11 weeks) has just been seen by orthopaedics and they're querying this. Just wondered if anyone has any experience of it and if he'll need an op?

Bumping for you.

I'm assuming you mean tethered? Good information here.

HTH

thanks for that jabberwocky. I did mean tethered - cant spell either. Its a bit more reassuring than most of the stuff I've found on the net.

Hi, my DD had a tethered spinal cord, was due to other condition she was born with. The cord was diagnosed when she was around 8 months old and we were told at the time that as she was developing normally it would just be a case of 6 monthly checks to make sure nothing was worsening.
As it was when she was 15 months old her development suddenly reversed and we took her in as emergency, her cord was pulling and the nerves were being damaged.
She was operated on to release the cord and we haven't had any problems since, we still go for yearly scans (she's 8 now)
I don't know a huge ammount about it tbh and don't know if it's different for everyone, but If I were able to go back I would push for the operation as soon as the diagnosis had been made rather than waiting.
DD did suffer some nerve damage in the time it took us to realise something was wrong and the operation and that could have been avoided if the op had gone ahead as soon as they knew what was wrong.

If there's anything else you'd like to know about the op or anything give me a shout

Just read link, My dd is still 100% incontinent and although I can't know for sure as she was still a baby at the time, I am fairly certain that her bowel and bladder function were disastrously damaged when her cord was being pulled. Obviously she wasn't continent before that but she did function 'normally' for a child her age, afterwards everything changed and she has suffered with bad constipation ever since. Something that was never an issue before.
Sorry, I sound like the voice of doom

Thanks for that. We're just at stage where he's had ultrasound and waiting for mri scan. So don't know anything really. Just waiting to talk to surgeon so we know more.

I have been reading a bit on the net but thats mostly about adult experiences. I'm not sure that s the best thing to do at moment as I'm worrying away. Glad to hear your DD is otherwise ok after op.

So how long did the op take? Did your DD have to go to ITU after and was she in any pain after?

Trying to think back, have a hard enough time remembering yesterday never mind 6 years ago
The op took a few hours, 4ish I think, yes it must have been because I came home while she was in (my mum and ex sent me away cos I was going a bit mad )
DD went onto hdu and was there for a few days then onto main ward. We were in for a week total.
She didn't seem to be in any pain at all afterwards the hospital were very good at managing pain meds and making sure she didn't suffer at all. She was groggy and sleepy for a day or two afterwards. day three she was up and bouncy That was a nightmare though because she still had a drain and drip in and trying to keep a 15mth old on her bed was awful! lol
But all in all, despite making myself sick with worrying about it, the op itself was fine, she was fine aftwerwards and we haven't had any cause for concern since

We did have glitch week after she came home as her wound got infected but thats just one of those things I think. Cleared up easily enough.

Hadn't even thought about keeping him in bed post op He's wriggly enough as it is! that's reassuring though as I'm not sure what I'm worrying about most. Still hearing that I will try not to worry so much now

I'm glad the link was helpful. It's not something you hear about that often so I can see where it would be hard to find information about. I had heard that interview on the radio and it just stuck in my head as ds1 was having some problems with potty training regression and anything related to that was of concern at the time.