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  1. #1
    Senior Member keps's Avatar
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    Great idea!

    I think this forum is a great addition to the CareCure site.
    My own cause of SCI was a spontaneous bleed, it would be good to hear from others who had no traumatic cause of their SCI.

  2. #2
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    Intraspinal Arteriovenous malformation Th4-Th8.

  3. #3
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by keps
    I think this forum is a great addition to the CareCure site.
    My own cause of SCI was a spontaneous bleed, it would be good to hear from others who had no traumatic cause of their SCI.
    For me an idiopathic (no known cause) spinal infarct at the C4-5 level. Now, functionally and sensationwise a C5-7 incomplete.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  4. #4
    Rock on Wise...guess ya did decide to put up a TM and Atraumatic thread to the bunch. I think it is a good decision and maybe more people will look here for answers. 10 years out and am still looking for some answers.

    T2 to T4 Transvese Myelitis from a Lupus flare. Struck within minutes. Woke up 4 days later from a coma without the use of my legs.
    "Dream as if you'll live forever, live as if you'll die today." ~ James Dean
    http://www.kristi-allen.com

  5. #5
    Senior Member keps's Avatar
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    Quote Originally Posted by Kristi
    Rock on Wise...guess ya did decide to put up a TM and Atraumatic thread to the bunch. I think it is a good decision and maybe more people will look here for answers. 10 years out and am still looking for some answers.

    T2 to T4 Transvese Myelitis from a Lupus flare. Struck within minutes. Woke up 4 days later from a coma without the use of my legs.
    That sounds terrifying.
    In my case, I had huge chest pain, then I was suddenly paralyzed. Literally one second I could feel my legs, a second later they were totally gone. It was so quick, I actually tried to stand, but fell as I suddenly couldn't use my legs. I had a nice fall as a result!

    I didn't realize that transverse myelitis caused paralysis so quickly, before I found out more on this site.

  6. #6
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    Quote Originally Posted by Kristi
    T2 to T4 Transvese Myelitis from a Lupus flare. Struck within minutes. Woke up 4 days later from a coma without the use of my legs.
    Its terrible to read about things like that you guys describes, like it can struck within minutes or even seconds like keps is writing. And not knowing what is going on must also be scary. And this can happen to anybody just like that? Don’t think healthy people know how luck they are and not knowing what is going around out there. – In my case I could see it coming against me for 2-3 years. I could “see” the wheelchair coming closer and closer. It was like my “accident” was in a super slow movie. That was also a bit scary I must say. I did try to fight against it by all means but for the time being it seams like the chair did win. I am T4 Incomplete now.

    Leif

  7. #7
    Senior Member keps's Avatar
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    I think it is different than if you have an accident.
    I mean, I was in shock after it happened to me - I'd never heard of a bleed on the spine, and I didn't understand how it could have happened so quickly (my bleed was massive, apparently - maybe that's why the paralysis was so quick).
    I think I would've coped better initially if it had been an accident - a tangible reason.
    But now, I think at least there is no one to blame for what happened to me. Nothing could have prevented my paralysis.

  8. #8
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    I agree with you, - the tangible reason. Like in my case I did not get the shock experience, it kind of developed over time. Above that the risk was also for me that I could have had a bleed and an infarct to the spine actually when I was healthy and walking. Lucky me I did not have a bleed and fortunately the surgeons did manage to remove my avm before it totally paralyzed me. When it comes to a bleed I know a few peoples in the US that I am in contact with that actually had a bleed from their rare lesion that avm’s are. I did not know about TM before I looked up this site and that seams even more strange than avm’s. Back to tangible reasons. In one way I am glad that I don’t have a tangible reason like a high speed car or motorbike accident is, this is because often then the person also can have major damage to the bone structure in the spine. But after my surgery they treated it like an accident, I got the steroids to prevent swelling etc. and also had to stay for some time at rehab.

    Leif

  9. #9
    Senior Member keps's Avatar
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    I don't really understand what AVM's and infarcts are.
    What happened to me was called a Spontaneous Spinal Extradural Haematoma.
    The doctors told me that they had no idea why it had happened to me.
    They also said that the bleed just suddenly occured that day.
    So it was a total shock to me wehen this happened, as I had no idea it was coming. I think I'd've coped better with it if I'd have known what would happen.

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