Posted more research on Tethered Cord Syndrome

I just posted two more links to recent papers on Tethered Cord Syndrome:

• [paper] Tethered Cord Syndrome: An Updated Review


• [paper] Section of the terminal filum for occult tethered cord syndrome: toward a scientific answer

These can always be found on the links section on the lower right of this blog.

Whether or not to Detether

Now that I have a diagnosis of "occult" tethered cord syndrome (TCS), and I'm a candidate for a detethering (SFT) surgery, I have to make the decision whether or not to detether.

This is a tough decision, and I am taking a three-pronged approach to solving it:

1. Clinical: Are my symptoms bad enough or progressing fast enough to justify moderate risk?
2. Research: What are the published success rates with SFT surgery as a therapy for my type of syringomyelia.
3. Networking: What do patients who've had the SFT surgery have to say about it?

I've solved the first problem; my symptoms and progression warrant moderate surgical risk (as much as I hate to say it). The second problem is tricky, as the idea of tethered cord syndrome (TCS) which becomes symptomatic in adulthood (possibly causing terminal syringomyelia) is a new idea. (See Related Links on this site for recent research). Still, I'm reading, talking to physicians, and learning about current research.

The third prong of my decision-making attack relies on talking with patients who have had the SFT surgery. This is where I need your help.

Tell Me About Your SFT Surgery

There are two ways you can share your surgical story with me. First, you can send me a private message by clicking on my profile, and using the Email link on the left. The other option is to share your thoughts with all my readers by leaving a comment at the bottom of this article. This has the benefit of helping others who may be trying to make this decision.

I've also added a couple of (unscientific) polls which you can vote on if you've had the SFT surgery.