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Are there others who have Cauda Equina Syndrome

I am just wondering if there are others who have the diagnosis of Cauda Equina Syndrome? The pain,nerve damage and changes it causes in our daily lives. I would like to find people in US who have experience with this diagnosis and are willing to share in hopes it will help others navigate there care. I personally have been given the challenge of learning how to deal with the affects of having CES, and I am learning as I go. I believe many health care providers don't know a whole lot about it either making this quite a bit more challenging. I would love to see a support group form. Where others can get the need praise they need to keep going or simply find out the pros and cons of diff. Meds.


  • and there are support groups on the web and facebook for those who have Cauda Equina Syndrome.
  • chrisloveslifecchrisloveslife Posts: 2
    edited 12/22/2015 - 10:20 PM
    I found this post a year later. Any tips or advice for someone fairly recently diagnosed with cauda equina syndrome?

    Cauda Equina Syndrome
    For more helpful information please click on link
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    Liz -Spine-health Moderator
  • I have CES, twice in fact.....feel free to pm me if I can help.

  • I have just been diagnosed with CES, finally, after 5 years of massive suffering, including a stroke (and I was an incredibly healthy 40-something). 5 years before they finally believe me. I am beyond angry. Next week I get my permanent colostomy bag and catheters. Although, I will finally have relief, it is overshadowed by the carelessness and the arrogance of a few doctors. No more screaming for 18 hrs on the toilet just to pass a pebble of poo. This couldn't have come any sooner. I have lost almost 50 lbs since the surgery causing the CES. I look like a homeless crackhead (or feel like one). I am dying and this is going to save my life. Nothing like getting the treatment you need at the very last second. Thanks AIG and work comp for ruining my life.
    never ever give up!
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