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Thread: Spinal stroke

  1. #1
    My name is Lisa, I am 52 years old. In August of 2006 I was going about my business, went to church for a seminar, went home for lunch, went to the restroom, when I got up my legs were gone. Spent 15 days in the hospital and rehab unit without knowing what happened to me. I had 6 mri's, spinal tap and 2 nerve conductor tests along with numerous blood tests. Still no answer. Finally a retired neurosurgeon that is a client of where I work looked at my mri's and said that I had had a spinal stroke and that it was not common. My lower back is pretty much wacked, my abductor muscles are shot, my right foot doesn't pull all the way up and my right leg is the weakest. Different spots on both legs and feet are numbess and I can't feel hot or cold on differents spots of my lower legs and feet. Feet most of the time feel like I am walking barefoot in snow. I had been doing physical therapy off and on which I guess has helped. The neurologists that I go to every 5-6 months now don't do or say anything. I guess I just want someone to tell me that there is something else out there to help me. Please reply soon. Lisa

  2. #2
    Super Moderator Sue Pendleton's Avatar
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    I was 32 when I had my spinal stroke. Having one with no known cause is rare. Most common reasons are cross clamping too long during heart surgery, epidurals and traumatic ruptures of the artery to the spine in an accident.

    Talk to your neuro about trying 4-AP and up your PT.
    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.

  3. #3
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    I had a spinal stroke also known as a Fibrocartilaginous embolism 12 months ago. Although I had intense pain at the time and varying degrees of Neuropathic pain since, the Doctor who diagnosed me was surprised that I had any pain at all at the time his other 15 patients over the past 10 years hadn't reported any pain at the time.

    Lisa maybe that is what you had????!!!!!

  4. #4
    My daughter had a spinal cord stroke (also thought to be a fibrocartilaginous embolism) 4 years ago at age 27. Hers also came out of nowhere, starting with numbness in her arm, and within a few hours she was completely paralyzed. She remains C3-4 quad, semi-vent-dependent. She was in Boston hospitals and still no one had any real experience with this.

  5. #5
    Hi KimB and Moonriver9,

    I had a spinal cord stroke 18 months ago at the age of 28. Welcome to the forum.

  6. #6
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    Hi everyone,

    I'm not sure if it helps anyone else but I feel better knowing I am not the only one, although I wouldn't want it to happen to anyone else, at least we have a shared experience to some extent.


    I have had quite a bit of improvement since the stroke, I could move neither leg when it progressed to its worse stage nor could I move my torso and it appears that Nancy's son has had alot of improvement, we are both about the same level. I'm T7 incomplete.

    Moonriver9 has your daughter had much improvement over the past 4 years?
    Luckydog how about you?

  7. #7
    Hi KimB,

    I have been very lucky in my recovery. Initially, I was completely paralyzed, on a vent and a feeding tube. I’ve probably recovered 85% of my motor skills. When people see me they cannot tell I have a SCI. I walk normal and even run about 30 miles a week (though it is much slower then pre injury). My only complain it bowl/bladder. I do not have to cath, but it is not even close to normal. I have both retention and urgency issues. I had an Interstim device implanted last week and I am hoping that helps me more.

    I am very lucky. I live an almost normal life, except I know where every restroom in the town is! Other issues… no pain sensation or temperature. No sweating below injury. Some strange jerky reactions and my hands won’t move if it gets really cold.

    Here's hoping for a cure! Cheers.

  8. #8
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    Wow, you have the right name, luckydog!

    I would love to be able to run again.
    Various muscles in my left leg are paralyzed. I cant move my left foot or ankle and my toes on the left foot are paralyzed. The left foot and leg spasm which allows me to place some weight on the leg to walk and stand assisted with a walking frame or crutches.
    I have done heaps of physio, I think in the US you call that PT.
    I also swim a couple of times a week and walk in waist deep water until my left leg gives out from 15mins to an hour, I use a rowing machine and a cut-down stationary bike that my husband nailed an old pair of runners to :-)
    I can walk for about 20mins max, sometimes i can only manage a few steps. bladder and bowel are a real pain but mostly manageable.
    I have to cath quite a bit, especially just before I get up to walk on a treadmill. I leak and can sometimes hold it just for a little while. At least I can usually sleep through the night without worrying to much.
    I think my left leg spasms in my sleep and wakes me to remind me I better get up and wheel to the loo if I need to.
    At least I dont have bowel accidents I had 2 accidents in hospital and went right off the laxative they had prescribed me and with regular bowel care, well, its manageable.

    I am hopeful of recovering movement in my toes and foot but after 12 months, it is looking more and more permanent.
    I have those other issues to, no pain sensation or temperature or patchy at best. My feet sweat a little but I can't feel when I sweat anyway. I sometimes find that after being on the treadmill, I feel on my back and I am soaked in sweat just cant feel it unless I use my hands to check. I have strange jerky reactions in my legs, mainly the left leg especially after or during exercise. I sometimes get a jerky spasm in my calf that wont turn off if I go over rough ground in the wheelchair or after getting out of the pool.

    I agree, though, here is hoping for a cure!

    Good luck with the Interstim device.
    Last edited by KimB; 10-08-2008 at 06:50 AM.

  9. #9
    HI luckydog,
    30 miles a week! I am so happy for you! sounds like you are still coming along.
    It was two years in Sept., I think that Bri is physically still improving.
    We changed his PT to a one on one training session 2x/week and that seem to be working out better and he says he feel it is helping him more than the PT. But he's not there yet. This whole experience has been very tough on him. Emotionally and develpmentally it came at a bad time. ( no good time for SCI) He also lost a close friend tragically a few months ago. So much loss. It has not been easy for him.
    I hope the interstim device works out well for you. If you don't mind, please let me know what you think of the interstim as this may be something that we would consider in the future.
    All my best to you. You have come a long way.
    Nancy

  10. #10
    My 16 year old daughter suffered from a fibrocartilaginous embolism and is recovering possibily due to her young age. She is very athlete and while there is no medical evidenc of reoccurence she was told to take is easy. Is there anyone in this fourm that has any advice from their doctor or personal experience on concerns about this stroke happening again?

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