Anyone experience of tethered spinal cord ?

[katey123]

Does anyone have any experience of spina bifida or tethered cord , I would love to talk to you about your experiences if you would like to remain private we can message directly xx

 

[katey123]

30 views and no comments I guess it really is rare then. So my little man is proven one of a kind then . xx

 

[Jazz]

Didn't want to read and run saw your post and no replys if your on face book there is a parents support group and another support group
https://www.facebook.com/groups/34787529880/?fref=ts
https://www.facebook.com/spina.bifida.16?ref=ts&fref=ts

hope these help xx

 

[katey123]

Just to let anyone who stubbles across this thread my son was born with a tethered spinal cord it was without warning as it didn't show up on scans, it has however not caused him any problems to date apart from him holding back alittle urine when he pees . He needs to have an operation called a detethering , as it's likely to cause him serious issues in the future such as bowel , bladder and lower limb movement issues which would all be unrepairable. So at 8 months of age he's off to GOSH next week and is likely to remain there for at least 4 to 5 days . Fingers crossed his spinal surgery will go well and I'll update after his op. xx

 

[Em91]

Just to let anyone who stubbles across this thread my son was born with a tethered spinal cord it was without warning as it didn't show up on scans, it has however not caused him any problems to date apart from him holding back alittle urine when he pees . He needs to have an operation called a detethering , as it's likely to cause him serious issues in the future such as bowel , bladder and lower limb movement issues which would all be unrepairable. So at 8 months of age he's off to GOSH next week and is likely to remain there for at least 4 to 5 days . Fingers crossed his spinal surgery will go well and I'll update after his op. xx

Hope the OP goes well! xx

Using tapatalk can't see tickers

 

[katey123]

Hello again , op went really well and he was discharged a day early because he was going nuts being confine to the cot he would not lay on his back as he was suppose to. Unfortunatly 3 weeks later we had to rush back to GOSH yesterday due to a large bump appearing on his back above his wound it turns out he's leaking spinal fluid beneath his skin so he's now got compression dressings this week to see if it can be solved without out needing more surgery , fingers crossed this will work we'll find out on Friday .xx

 

[KirstieK]

Hi Katey, new to the forum although I've been reading it for years. My son Dylan has Spina Bifida and Hydrocephalus, he's 18 months now and Is doing so well, better than we ever thought. Am sure your little man will recover in no time, kids bounce back so quickly. If you want to get in touch, more than happy, just let me know! Thinking about you all . Xx