Tethered Cord

*The information contained in this post is not intended to replace that of information obtained from your doctor. This is our personal experience*

Over the past 8 months or so Evie has been displaying different signs that could either be individual issues she is having or be related to something larger, like tethered cord. She was first having issues with her bladder so we sought out her urologist who suggested she get botox injections in her bladder. This helped for a while but as time went on the UTIs came back and the accidents started again. Earlier this year Evie’s feet started turning in more and more. She used to only need a de-rotation strap on her left leg and as time went on the right began needing it and even then the strap wasn’t helping like it used to. We blamed it on her feet just getting tight so we sought out her orthopedic surgeon who suggested botox to relax the muscles in her legs so we can get a better stretch on them – that should fix the problem. Again, the botox lasted a month with good results and then we could begin to see the progress dwindle. Evie’s physical therapist, whom we adore, was keeping note of all of this all along the way. She began voicing her concern that there may be something more going on. With the above and increased clumsiness, lack of endurance, and some other issues she encouraged us to seek out Evie’s neurosurgery team to explore tehtered cord. In late April Evie had a sedated MRI to check out our suspicion. After meeting with her team and discussing the options and risks involved we have decided to proceed with a tethered cord release. This is a major micro-surgery that will be performed by her nuerosurgeon.

Essentially Evie’s nerves have become entangled with scar tissue near her spina bifida repair site. This entanglement is what is referred to as tethered cord. With the cord tethered Evie is not able to function as she used to and is actually regressing. The hope is that Dr. Elbabaa will be able to “de-tether” each and every nerve being affected; therefore, allowing progress once again. Ev will most likely not gain back what she has already lost so we want to stop any further damage before it gets any worse. This is the most complex surgery she will have to date – more complex and with more risks than her big brain surgery 2 years ago (chiari decompression). Most don’t realize the complexity and risk with this surgery since it’s *just* her spine and not her brain. After surgery Evie will have intense physical therapy, at minimum twice a week for ten weeks. She will be out of school, rehabbing at home with mommy, for at least 2 weeks and possibly 3. We hope to be able to keep her progress updated on the website, but if you aren’t seeing updates here, please check her facebook page here {the yellow arrow below points to the tethering shown on Evie’s MRI}