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    Spinal cord hemmorhage

    Hi I am new to this forum and of course with a new 'fresh' injury. My story starts with fact that I have an autoimmune disease called vasculitis. It was stable and cool for last 10 years and I was on constant intake of 5 mg/day prednisolone and blood pressure medicines. What happened is my doctor at the time decided that I'm young and strong enough (29y old) to try and reduce my prednisolone intake initially to 3mg and then to 1mg. Long story short it caused my vasculitis to wake up again and because it's a cardiovascular disease it bursted one of the blood vessels at my spinal cord that flooded it with blood and compressed it at C5-T4 level. I had two surgeries and have been diagnosed as ASIA A at injury site. Back on 20mg/day prednisolone.
    After now spending 2 months in hospital and 3 months at rehab I recovered to a degree and I have functioning arms, although my left is significantly weaker. I can also keep my balance to a degree although far from perfect. I also have feelings of some more muscles just not on the outside - I mean it feels like I if I could stretch them in my legs and elsewhere just you can't see it outside. As if they are weak or something. Also before being discharged from a rehab centre they did another ASIA test on me and it seems my sensory feelings moved down one level to T5.

    I'm back home now doing 3-4 hours of training daily - an hour with my PT, an hour with weights for upper body and an hour on a passive bicycle.

    I also have been offered a potential experimental treatment by one local scientist that works with stem cells. I have been injecting stem cell exosomes for the past month and it seems to be giving some of those 'under skin' feelings back. I also can move my legs slightly to the side if I lay down and my knees are bent. Not sure though if this comes from my abs or buttocks muscles. We are also trying out stem cells directly intravenously to see if that will give anything back. Since it costs me nothing I'm all into this game. Thinking of adding a FES bike into a mix of all this to maybe give those cells a bit of 'training'. Still a long game at least for a year ahead.

    Just a million dollar question - what are my perspectives potentially? I'm considered complete ASIA A but I do feel some back muscles lower than my injury site. I also have some irritation feeling at my penis, can push things out in a toilet after little stimulation. Not sure if this is relevant though. Anyone can relate to anything I write about above?
    Last edited by Adam Bukowski; 23 May 2021, 12:30 PM.

    #2
    Welcome to CareCure, Adam. Where are you located? It would be helpful to add that to your profile, as well as your birthday year, so that others can put your comments and questions into context, especially when looking for resources in your area.

    Curious about the stem cell therapy you describe, and wondering what route these injections are being given. Injections into the blood stream vs. injections directly into the cord have shown significant different results in animal studies. You may want to look at the recent recording of Dr. Wise Young's discussion of his work and experience of others in this area.

    It is common for people with SCI, especially due to vascular causes, to get some return over their first 2 years after injury, so it is not possible to say if your return is totally due to the stem cell injections. You may want to explore some of the information about cure research on the Cure forum here too.

    Do you have normal sensation at your anus? If so, another ASIA (actually now called a ISNCSCI) exam would be indicated to see if you are actually an ASIA B now.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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      #3
      Hey there and thanks for your reply! I'm 29y old from EU. Regarding stem cells - I did about a month of exosome injections through muscles (my bum) and just a single shot of actual stem stells intravenously. Doctor has mentioned me about potentially selecting a few points at the cord and trying it out that way too. Which I imagine should give a bigger boost to regeneration?

      not sure about anus sensations - I do get feelings like 'something is coming up' but don't feel it actually coming out when it does. Sorry for the description it's also very hard to find what's real and what's not among all those sensations throughout the body

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      • SCI-Nurse
        SCI-Nurse commented
        Editing a comment
        Please add that information to your profile, so people don't have to search your posts to find where you live and how old you are (which will of course change, so a birthdate helps a lot). Which country in the EU?

        To be an ASIA B, you would have to have normal pinprick and light touch sensation within 1 cm. of the anal area where the skin transitions to mucosa. Your ISNCSCI would need to be done by someone who has been trained in that exam. (KLD)

      #4
      I've updated my profile it should be visible now. I'm from Lithuania

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        #5
        May 2021 Keck Center Open House presentation by Wise Young, MD:

        https://rutgers.zoom.us/rec/play/EIs..._zm_rhtaid=949

        (KLD)
        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

        Comment

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