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Thread: new here spinal stroke

  1. #1

    new here spinal stroke

    Sept 5 went to the ER after suddenly being unable to stand. no warnings, no sudden injuries.
    MRI showed T7 and T8 bulging against my spinal cord. Emergency surgery the next day on the 6th. Not only can I not move anything but I have no feeling below the waist.(following surgery). At first they thought it was transverse myelitis. then decided on spinal stroke. (was at a different hospital by this time). With a couple weeks I started to swell up in the abdominal area, legs, etc. So swollen I couldn't even sit up. Got to Johns Hopkins at some point. The day after I got there they had to rapid response me. On the way to the SICU my HR dropped to 30. Turns out I had a GI bleed on my R side. Unknown how it started. I ended up getting 8units of PRBC within a week. Had angioplasty which showed very abnormal spinal arteries but apparently no bad enough to fix. I also had a blood clot in my L leg as well as an old on in my R leg. From Hopkins I went to University of Maryland Rehabilitation & Orthopaedic Institute where I spent 3 weeks, then to subacute rehab. then home for about 3 weeks in dec.

    on Dec 28th I went back to the hospital because of concerns regarding my wounds. I have pressure wounds on both outer ankles. Turns out I have an infection to the bone. I have wound vacs on my ankles.
    I'm now in DE for wound management and long term IV antibiotics.

    i'm very frustrated at my lack of progress. Maybe i'm just inpatient? (it's been 4months).
    I have an appointment with "Physical medicine and rehabilitation" johns Hopkins.

    I've seen info regarding spinal implants and stem cell ..... so ... who knows.

    to make it all worse. My mom died the day after my sept 6th surgery.

  2. #2
    So sorry to hear about your Mom. Spinal stroke is not very common. Do you have any type of blooding disorder or anything?
    Hope your wounds will heal with the antibiotics. Just keep concentrating on staying healthy and independent. Exercising your upper extremities is key to your ability to be independent. Do them daily or twice a day.


  3. #3
    Sounds vaguely familiar. Lost track of exactly when I was in which hospital (3), rehab (2), or assisted living facility (3). You have some serious conditions. The wounds and infection can get better but it will probably take awhile. 4 months of daily IV antibiotics is not unheard of.

    This forum is a good place to get some perspective, information, and unload frustrations if you need to. Miss my parents but glad they did not have to watch me go thru hell. Hopefully you have some caring support of some kind close by. Godspeed to you!
    "Never turn your back on fear. It should always be in front of you, like a thing that might have to be killed." - Hunter Thompson
    T5/6 complete

  4. #4
    Like you, though I miss my mom - i'm glad she didn't have to watch me go through this.

  5. #5
    Nope, no bleeding disorder. In fact before this happened I was fine, going to the gym, eating right, etc.
    The wounds happened quickly - my skin is super sensitive. Thankfully, I also heal quickly so they are looking much better.
    The mental aspect is making it harder.

  6. #6
    It is a huge adjustment. Do the rehab hospitals have a support group? Carecure has super supportive and knowledgeable people but it is online. CWO

  7. #7
    No bleeding disorders prior to when I lost the ability to stand. However during all this I did develop a GI bleed for which they don't know why. I do have an old blood clot in my R leg and a new one in L leg.
    My wounds are slowly getting better.

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