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I would like to see a forum for those of us who are sufferers of Cauda Equina Syndrome. While it is supposed to be such a rare syndrome, I have seen too many patients who have it show up periodically and then I am one of a cod uple of people around with it to help them answer their questions or to talk with them.

I think that it would be helpful if we added that forum and can include other spinal cord injuries if you would like but the resources are so different than for back surgery, and the outcomes can be so different that I think a separate forum would be beneficial and give those of us who suffer from these type of injuries to our spinal cords a place to go....
I would even volunteer to help moderate or facilitate it if you would like.
Sandi
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  • Sandi, I hope they allow this. I was on the "verge" of this syndrome when I was at my "lowest" and was completely unable to walk, not due to pain, but because the nerves had been compressed and I was unable to feel/move my left leg and my right was headed that way. Fortunately, I never lost bowel/bladder control because they were able to treat me soon enough. I can't imagine what people go through with this. I will also say that after my bac surgeries this summer, I was sent to a rehab hospital with the diagnosis of "spinal cord injury". I thought this was a mistake at first, but it was explained to me that due to the extent of surgery done on my spine, that all of the issues I had (foot drop just being one of them, etc) that really I was suffereing from spinal cord injury more than the traditional surgical issues. Now although I just confessed to not exactly "qualifing" for this club no one wants to be a part of anyways, I do think just reading the forum and hearing others could have still been beneficial to me as well. Good luck!
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • dilaurodilauro ConnecticutPosts: 11,663
    being added to the section
    Conditions Not Covered under Other Topics

    This has been the vehicle when members request a new forum. Just starting a new thread in that forum category can get it started. There have been several new topics added there and the response was minimal. However, if the response was widespread, then there is a possibility in creating a new forum container. That has happened before.

    So , my suggestion would be to start a thread with that topic and see what happens.

    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
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  • sandisandi Posts: 6,269
    edited 03/15/2013 - 10:32 AM
    Allmetal and Dilauro.
    AM, I'm sorry that you have had to deal with the SCI. It truly is different than "just" back surgery- the results are or can be permanent and totally life changing. The parts that no longer work as they should, the changes in bodily function can be disconcerting to say the least.
    I developed CES after my first back surgery, and now have it again, but this time- they want to hold off on doing the surgery because my dura is adhered due to bmp added during my salvage op on 2007 , so now the dura is stuck to the vertebre at three levels. Each level of compression /damage adds a whole new dimension to the way my body is effected. They tell me when I loose my ability to walk at all, then and only then will they consider surgery because of the resulting length of tear there will be in the dura...I don't know when it will happen but I have times when my legs suddenly seem to be very weakened, and feel like they will collapse.
    I'd just like to see a forum where these issues that come with spinal cord injury and it's effects can be discussed and maybe post some resources to various groups or websites that might help someone like us.
  • and let me know so I can follow... maybe we can "drum up" some buisness.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • dilaurodilauro ConnecticutPosts: 11,663
    Just go into the forum category for topics not covered,
    Click on Post New Topic
    And then use a good Subject line to attract member's attention.
    Then I can track its usage (basically see how view per day, how may posts per day etc....
    Then after a couple of weeks, we can collect everything to see if there is anything that could be expanded

    It would be best coming from one of you guys. I think people get tired of some of my new threads or think I am trying
    to do something (what I havent figured out yet)
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
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  • I will start a new thread- and thanks for both of your support and help. Like I said, it is so different for those of us who on top of having back problems and surgeries, but also suffered a spinal cord injury , that it would be nice to have some resources and places to go for more help and to talk with others who do understand the drastic changes that can come with it.....let's hope that there is an interest, more than ours to keep the idea a float......
    Dilauro
    Thanks for all that you do, we seem to cross paths often and are of a similar opinion in dealing with pain and management of it........
    s
  • Thanks Sandi! I'll be on the look out for it! I appreciate you doing it as I'd feel odd initiating it since I have never had CES. And you are so right, spinal cord injuries are a different beast. I was so very fortunate that I was able to spend 3 weeks in an inpatient rehab. My entire floor was devoted to spinal cord injuries, so all of my therapist and nurses were trained in this. I know my success was because I had such excellent care. And Dilauro... your "think I am trying to do something" is very intrequing and now I want to know what they are thinking! I love a good conspiracy theory. lol. And I've thought multiple times about starting a thread dealing with images and pain management reception(?) but could't decide if it was necessary, or even too controversial... long story short(ish) one of my BFFs had some major back issues a couple of months ago, went to see her PCP who did x-rays and told her it was DDD. This "diagnosis" of course petrified my friend because it does "sound" bad, but I was able to reassure her that most people our age (especialy those who have carried children) have DDD to some extent. Anyways, she was sent to an orthosurgeon who basically told her she could do PT and didn't need a follow up and was "dismissed". She has only been given neurotin for pain. Physical therapy has helped her, but she is still in a lot of pain. I know this girl, I know how "tough" she truly is, and for her to be so easily dismissed simply because her x-rays don't "appear" terrible is inexcusable, but it appears it happens way to often.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • dilaurodilauro ConnecticutPosts: 11,663
    Thank you...
    Many times I think it comes down to some very simple things.

    1 - Respect for the Individual
    2 - Listening to others problems
    3 - Believing in the Medical field, even though it is not perfect, it is what can help us
    4 - Having others like you, like me, on a common ground that can see through the bs and just rely on reality
    5 - Caring more about others than we do about ourselves
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
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