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Thread: Spinal stroke?

  1. #31
    setanta

    See responses to your duplicate post here:

    http://sci.rutgers.edu/forum/showthread.php?t=120951

    (KLD)

  2. #32

    Next Steps

    Good Afternoon, I just found this forum and I have read more information today on spinal strokes than I have in the past year. So great to have information on this condition. My daughter (then 12) suffered a spinal stroke - ischemic infarct - 14 months ago. She was a very healthy, active 12 year that did cheer, gymnastics, competitive swim and was never still. She took a tumbling class on a Saturday and after working on the uneven bars felt lightheaded and dizzy. She complained of a pulled muscle feeling in the back of her left leg. Fast forward 24 hours and she was at home complaining of tingling and pain in her lower body and then sever pain in her back. When we tried to get er up to take her to the hospital, she was unable to move or walk. 2 MRI's, and 2 hospitals later, we were told she had a spinal stroke in the anterior cord. She was diagnsed at Asia B incomplete, T-9 originally, She completed her recovery and inpatient at a reputable childrens rehab hosptial that specialized in spinal cord injuries. At discharge, 7 weeks later, she was reclassified to a t-12. She has flacid paralysis, no motor function below t-12, dull pressure sensation & directional positioning but not temp or pain sensation. No bladder or bowel function, uses intermittent catheters and nightly suppositories. She works very hard 2/3 X per week in PT, is very positive and active. She walks with KAFO's and a walker in PT and occasionally at home. I keep feeling like there has to be more. What elase should we be doing? Testing, specific therapies, clincal trials? We are at a standstill and want to get some guidance.

  3. #33
    Super Moderator Sue Pendleton's Avatar
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    Concerned SCI Mom, where did your daughter go for acute and rehab care? More of a profile would help fill in ideas going forward. I'd start with a second opinion on her diagnosis. I have never heard of anyone with anterior cord syndrome also being flaccid. To get insurance to pay for more PT she needs a more believable diagnosis.
    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. #34
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by setanta View Post
    I really appreciate you sharing your experience and advice. We're feeling thrown into the deep end of the pool with this event and people like yourself and this forum really make a difference.

    Much thanks and the best to you and your recovery.
    If she recovered the foot after discharge than go back to insurance for outpatient PT on a regular basis. Each muscle that returns or task she can do needs documented to continue PT. Yes, she and everyone else should get more inpatient time. At 12 days most aren't even out of spinal shock so bladder tests are not accurate estimates of how to deal with her specific problems.

    And yes, GBS, TM and AVMs to tertiary syphillis are all part of the diagnosis by elimination.
    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.

  5. #35
    Quote Originally Posted by Sue Pendleton View Post
    Concerned SCI Mom, where did your daughter go for acute and rehab care? More of a profile would help fill in ideas going forward. I'd start with a second opinion on her diagnosis. I have never heard of anyone with anterior cord syndrome also being flaccid. To get insurance to pay for more PT she needs a more believable diagnosis.
    She completed her acute and rehab care at Kluge childrens rehab facility / University of Virginia hosptital. You mentioned anterior cord syndrome? I've not heard anyone say she has this. The way its been explaining is that the Anterior cord is where the infarct occured. Insurance is still paying for outpatient pt which we attend at least 2x per week. She continues to see improvement in her core strength, balance, etc. but no muscle movement. Her lower body has atrophyed fairly significantly. Just looking for any advice/suggestions. Thank you so much.

  6. #36
    Super Moderator Sue Pendleton's Avatar
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    "She has flacid paralysis, no motor function below t-12, dull pressure sensation & directional positioning but not temp or pain sensation."

    Anterior cord syndrome leaves a person with proprio-sensation (knowing where you are in space like closing her eyes and she knows when a PT moves her right foot up, down or sideways), light touch sensation (can feel touches everywhere on her body but not distinguish between pinprick and dull or hot and cold) and vibration sense when the docs pull out tuning forks and she can feel the vibration when touched with the vibrating end.

    If that sounds like your daughter than I'd ask her neurologist or neurosurgeon to better explain what they mean by "flaccid". I've just never heard of a person who is incomplete from a spinal stroke that has flaccid paraplegia or quadriplegia. She may not have any motor control or use but that does not mean flaccid by itself. I remember when I was 'woken' up for something in the ICU from the coma like state they had me in and seeing my one leg lifted up and seeing that calf muscle no longer there just very wrinkly skin. Then I was back under. As spinal shock wore off later I started getting muscle spasms and my legs looked a lot more normal. My infarct was on my right anterior cord around C6 or the right side was hit first by the lack of oxygen.

    So she can most likely get more than twice a week if the flaccid becomes spastic. I would talk to her rehab doctor about spinal shock and is it over. I assume it is if she isn't having problems using IC for her bladder. And then ask more questions about what they mean about "flaccid". Suppositories normally aren't how flaccid paras deal with their bowels. If she is on any drug like baclofen she's probably a spastic incomplete para and needs more PT. :-)

    Again, I have absolutely no medical training outside of very basic battlefield stuff in basic training. Give me a piece of Glad wrap and I'll be happy to fix that sucking chest wound or a belt and a good size stick and I can make a tourniquet...
    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.

  7. #37
    Thanks Sue Pendleton - I'm sure I've heard doctors describe mydaughter as having "flacid paralysis" but maybe I'm misunderstanding. What is the definition? Your last post is accruate to a T in describing her condition except for being able to feel vibrations. She cannot. Also, her proprio sensation seems limited. By that I mean, she can close her eyes and tell you if your moving her big toe up vs. down,if she's expecting it. But, I've seen her on her bed on the laptop with one of her legs having fallen off the bed...and she didn't know.
    She no longer takes baclofen. She did initially, but has been off for 6 months. She has no spasms at all, which is why her leg muscles are shrinking up. She does IC and uses a suppostory nightly, as reccommended by her urologist. Her PT schedule is at least 2X per week, she also swims and excersises at home on the days she doesn't go to the gym. Thanks!

  8. #38
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    Hello concrened SCi mom, So sorry your daughter has to go through this. i was dianosed with tm had the same tingleing and that same severe pain and then felt the life go out of my legs. had no reflexes nothing got lots of therapy for a year and then the gym to work legs. i now walk with a walker but have no ankel movement i wear afo s braces on calfs . i could not bear weight for a long time was wheel chair bound for around 2 years. mabe she will get more back too.

  9. #39
    TM from PA & smashms - Thanks for your reply. I agree that it's so important to keep pushing forward and working toward a goal. She still does PT 2-3 x per week. She also works at home on off days. The specific diagnosis of her stroke event was Fibrocartilaginous Embolism. We are told it is very uncommon. Forums like this are so important, as they can reach many folks. Best of luck in your recovery!

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