Does anyone else’s child have or had a tethered spinal cord? Dylan was diagnosed with a mildly tethered cord at L3 and will be undergoing surgery to “untether” it next week. I was just wondering if anyone else has had experience with this. Sadly, this is a necessary surgery for Dylan because the nerves involved control his legs and bowel/bladder control. We were told if he doesn’t have the surgery, as he grows the nerves would get pulled and cause nerve damage and possibly make him unable to walk or ever be continent.
If you enjoyed this article, please consider sharing it!
Yes, Allie had a tethered spinal cord. She had the operation in December. We were told that we could wait for more symptoms to occur, but the downfall is that once you lose things (like bladder control), you can’t regain those functions.
Before having the surgery, the nuerosurgeon had her go to a urologist to test her renal function. At that time, they discovered she has developed kidney reflux. They think it’s from the tether.We will be going for a six month follow up to see how the reflux is doing. They are hoping it was caused by the tether, and that we are preventing it from getting worse, or that we have fixed the problem.
With all the factors involved, we decided we were not willing to take the risk of not doing the surgery. We were also told some stories from others that really added to the final decision. One person told me that her sister ended up losing feeling in her legs. Since Allie does not talk, we have no way of knowing if she can feel her legs or not. Very frustrating! They say that some of the symptoms may not show for many years.
With all factors involved, like gastro reflux, kidney reflux, Allie not walking, fine motor issues, speech issues, and just the overall feeling that we want her to be the best that she can be, the unanimous decision for everyone involoved was for her to have the surgery.
Unfortunately, Allie doesn’t sedate well, so she had a pretty tough time staying under for the 4 days that they wanted to keep her totally knocked out. The other downfall was she developed an infection on the surgical site 10 days later. They believe it was a staff that is common in hospitals. She went back in the hospital for another full week.
On the up side, she is doing really well. We have seen some improvements with her. The overall feeling for me now is that I’m really glad it’s over, and I hope we helped her. I was very overwhelmmed with the idea of surgery on the spine, and I am really sorry you are having to make this decision.
I hope this helps, and keep us posted.