What I Know.

I've been doing my research, so far here are some of the answers I've found to questions I've had. Sorry for the medical lesson, but I know many of you have the same questions.

What is a Tethered Cord?

The spinal cord fills the spinal canal throughout the neck and mid-back regions. At the upper portion of the lower back (the lumbar region) the spinal cord itself comes to an end. At this point, the end of the spinal cord is free, i.e. it is not attached to any of the surrounding structures. A "tethered" spinal cord is a spinal cord that is tightly fixed at the lower end so that there is not a normal amount of movement of the lower end of the spinal cord. This results in a tight pull or stretching on the lower portion of the spinal cord and can cause neurological damage as the tightness increases due to continued growth of the spinal column.

Why do we have to do surgery?

The only effective treatment is surgical. The surgery for untethering of a spinal cord has two goals: first, to stop any further neurological deterioration, second, to hopefully see some improvement in any lost function. Once neurological function is lost it may never recover. This is why surgery is indicated when there are early signs of neurological change.

Can it happen again after surgery is done?

Apparently yes. It can keep happening until he is done growing. Teenage years. Please start praying now that it doesn't reoccur. My other big concern here is I believe that an MRI is the only way to determine tethering...I really don't want MRI's to become a more regular part of our routine. I don't know if this is avoidable, but until we find out, please pray with me that it is.

What has caused Colin's tethering?

There are many different causes. His is caused by fatty filum (I spelled it wrong earlier) or thickened filum. There is a small, threadlike piece of connective tissue that connects the lower end of the spinal cord to the sacral end of the spinal canal. This is called the filum terminale. If the filum is thickened and is shorter than normal, it is usually filled with fat and it pulls down on the spinal cord, causing tethering.

Here is the best news I found today:

This surgical procedure is usually the simplest of all untethering operations. A single level of bone is removed in order to allow access to the tight and thickened filum. The filum is easily identified and cut. The filum has no neurological function so the procedure is unlikely to cause any neurological damage. Still super scary, but that is a least promising and relieves my worries regarding the damage of anything else.

Thanks for all of your thoughts, prayers, kind words. Chloe is still not feeling well. This is apparently not the 24-hour kind of flu. She is barely drinking and is not at all herself. Very tired, very quiet, very unsmiley. Very worrisome for her Mommy. Pray especially for Chloe tonight. This Mom needs her baby back.