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Spinal cord tethering?

speedy2056sspeedy2056 Posts: 3
edited 06/11/2012 - 8:52 AM in Lower Back Pain

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!


  • My sister in law was born with spina bifida and now has cord tethering but she's still able to walk and fought her way as a child to walk. She had a metal plate put in her leg where the muscle was supposed to be. She has to do cathing also every 4 hours or more depending on fluids. I think she had surgery as a child but now her cord is tethered and has some scoliosis and bulging discs but she's able to get by with pain killers once in awhile. She said she wouldn't do surgery yet unless the pain was really bad and she's 50 this year.

    I would get a second opinion from another Surgeon before any surgery and ask if you didn't have surgery what would happen. Do a search in the blue box at the top of the page what to ask the Surgeon when you see him. I hope your Pain Management Dr. helps keep your pain levels down. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Thank you for the reply!

    I asked the surgeon what would happen and he said all I'd get is pain but the various horror stories online had me concerned. It's most likely I had the tethering since I were young as my mum said there has always been a hairy patch at my spine, and I've read thats a telling sign of tethering. She took no notice of it. I am mainly fine and my pain is positional which leads me to believe it's not from tethering now but perhaps a disk issue.I will go back to the surgeon to talk some more.

    All the best to your sister in law! :)
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