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Peace of mind

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  • Peace of mind

    Hey, there is something that is on my mind which I would to ask other people here and how they manage and experience things.

    I'm a rather "new" SCI. Cervical myelopathy with stenosis and had decompression on C5 - (partial) C7 5,5 months ago and have spinal cord injury because of not noticing I had a compressed spinal cord.

    I'm starting PT next week so I'm looking forward to that. But in the meantime I have 2 concerns which are kind of keeping me busy in my mind.

    1. My spinal cord damage is increasing even though I had decompression done. I'm having tests done and neurologist and surgeon are trying to figure it out.

    2. My MRI shows that although I had decompression done that my cervical canal is so small that my spinal cord has little fluid on both sides but that's minimal. If it gets any smaller due to any circumstances I have a compressed cord again.

    I'm still a pretty okay walker (have trouble with stairs and standing for more than a few hours) and still have my bowel, bladder & sexual function. So I'm terrified about losing more because things are not stable.

    I know you can't predict the future and I'm usually also pretty calm in most situations but the too tight canal is freaking me out. So I'm trying really hard not to let these 2 things get to me but it's hard. I try to visit friends and go out, go to my work, play the guitar and record music.

    Is it something that gets easier? Or do you have other ways to not worry about these things?

  • #2
    I don't know how not to worry. My issue is progressive MS, and I never know from one day to the next what will happen - it's frankly terrifying, and the only thing I can do is to maintain my general health as well as I can, plus distract myself with reading and other interests. There is literally no way to predict what will happen with the cord, whether or not you have had surgery. This is an existential island, I know how you feel!
    MS with cervical and thoracic cord lesions


    • #3
      Yep. I too have MS. Each day is an adventure.

      All I can offer is deal with it as it comes. When things you used to do get hard, figure out ways to cope.