I was diagnosed with spinal cord tethering last week. I do not recall the level or placement. I was born with spina bifida and am confined to a wheelchair. I have some good movement of my legs even though one of them is numb from the knee down. It is that leg that I get more of the cord tethering pain on. I also have hydrocephalus and chiari malformation. I catheterize intermittently every 4 hours, approximately.
In regards to my spinal cord tethering, I asked the surgeon (who diagnosed me with it) what would happen if I left it. He said most likely just pain. Well, the internet says otherwise! I am now worried about possible motor function and bowel deterioration. I have a history of being constipated, anyway. I can leak between catheterization but this mainly depends on the volume of fluids I drink. I may drink too much at times.
Pain is minimal with my spinal cord tethering - I get it mostly if I slouch or lay on my back in my bed. It feels like a dull ache at other times during the day, but can get worse when I am in those positions. The pain also is intermittent and I am used to it's presence. I made the choice of not having surgery until necessary but I read horror stories about the cord splitting or even SNAPPING! Is this rare??
After doing research, I am actually amazed that I wasn't diagnosed with cord tethering when I was a child since most spina bifida children have the surgery at a young age.
I really hate surgery, even though I have had many. I have a big fear of being anaesthatized. I am now 29. Is there a good chance that symptoms will badly deteriorate at some point?
I'll be grateful for any information. Sorry for the long post!