Babies: 0 - 3 Months

Tethered spinal cord

I never posted an official birth story for DD because I guess I just wasn't ready to talk about this but DD was diagnosed with a tethered spinal cord at birth. She is fine and has no deficits from the tethering at this time. We had no idea due to the fact that it usually doesn't show up on u/s. The only reason they knew was because she was born with a sacral dimple with a skin tag( which is a telltale sign of tethering). She has her MRI the end of May and her surgery to release the tethering is mid-June.

Surgery is the only option and as the date gets closer I am getting more and more nervous. I've read a lot online and the neurosurgeon was great but I'm just wondering if anyone has any personal experience with this. Its just so hard to imagine her having anesthesia twice and the surgery; she's just so little :(.

TIA!



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Re: Tethered spinal cord

  • So not my own personal experience but my coworker's granddaughter was born with the same issue. They did ton's of research online and talked to lots of doctors and they ended up on the same path that you're on as far as the MRI and surgery timing. It took them awhile to get referred to the right doctors and end up with the right diagnosis. It was really scary for them because it's always scary when such a little baby has to go through that but she is doing so well now. My coworker gave us the weekly updates and it sounded like she felt yucky after the anesthesia but the actual surgery and healing went very very well.
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  • ka2shazka2shaz
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    My daughter has a sacral dimple, but we don't know yet if she has a tethered spinal cord. We have an appointment on Monday to find out. Please keep us posted on your daughters experience.
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  • image ka2shaz:
    My daughter has a sacral dimple, but we don't know yet if she has a tethered spinal cord. We have an appointment on Monday to find out. Please keep us posted on your daughters experience.


    Are you going for an u/s or mri?


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  • My DS was born with a sachral dimple. It was so deep at birth, they thought for sure he had a tethered cord and that it had a tiny opening to the outside. The first doctor we saw wanted to do surgery but we ended up seeing a pediatric specialist and after an MRI in which theyused a special dye to check to see about the opening, they were able to determine that it wasn't opened but not if there was a tether. He didn't think so, but the MRI showed what looked to be a small connection. We chose, after the doctor's input and suggestion, to wait it out. The specialist told us that if it was tethered we would know before he turned one year old. We were told to look for him to arch his back, hold his head and cry, and be concerned if he stopped making developmental progress. I am so glad we waited in our case, because he is fine now at almost 4 years old. I would definently advise not doing surgery unless they are 100% sure it is tethered. Good luck and I hope it all works out! For what it's worth, when he did have anesthesia with the MRI, he was fine so don't stress about that!
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