The term "tethered cord" is overloaded with two meanings. This is article about spinal cords which have scar tissue (or adhesive arachnoiditis) attaching them to the dura at any level, not about the controversial "occult tight filum terminale" tethered cord.
This article, Untethering the Invisible Knot, follows a group of patients with varying degrees of partial paralysis as they try cord detethering sugery to try to preserve or restore neurologic function.
What I like about this article is the stories of strong people who are living with spinal cord injuries (SCI). I also like the realistic reports of surgical outcomes. I feel like most neurosurgeons have a excessively optimistic view of their outcomes, which is reflected in the very positive statistics they report. When you talk to patients, you get a different view of surgical outcomes.
I believe any intradural spine surgery is very risky, and that the scarring and inflammation caused by the surgery often negate any initially positive results.
If I may get on the soapbox for a moment, I'd like to urge neurosurgeons to be more scientific about their outcomes. Having a neutral third party doing pre- and post-surgical assessments would yield a more accurate picture of true patient outcomes. I know this is easier said than done but I've found the current set of outcome data presented by neurosurgeons to be, at times, significantly optimistic.
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3 comments:
That is a great article, thanks for sharing!
How are you feeling these days? It has been awhile, I hope the lack of posts mean you are out enjoying life.
I found that I have a small ACM1 in December of 08. There is a possibility I have tethered cord and so might my 3 years old daughter. Would you mind communicating with me a bit by email? I am having a really hard time finding information about the TCS stuff. Thanks!
curiousityandthecat@yahoo.com
My daughter had her cord de-tethered the summer following her high school graduation in 2003. Her surgeon was blatantly honest with us. Her surgeon, having suffered from the same disorder, told her that she will live with chronic pain forever and that the surgery will not reverse the damage but rather stop further damage. She also has a syrinx, for now she just monitors it with annual MRIs. She has significant scoliosis as well, with a 45-degree upper curve and a 30-degree lower curve creating an S formation but with a twist to one side. I am going to send her the link to your sight and hopefully she can find some comfort in talking to others that have been threw similar experiences. She has gone on to finish college and teaches autistic children, no easy job for someone with chronic back pain.
BTW: she was a varsity runner in high school before she began to experience weakness in her legs that no one could seem to explain. It took us over two years to find a "real" diagnosis, most just said it was in her head. By then she said sometimes it seemed like her legs just wouldn't move. Other times she would say that it felt like bugs were crawling up and down them.
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