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Thread: Reaching out to other Brown sequard patients

  1. #1

    Reaching out to other Brown sequard patients

    Hello Everyone,

    I am new to this forum, and 5 months post surgery to remove a spinal cord tumor - T3-T5. Diagnosed with brown sequard syndrome. Right leg is weak and can't move well, does not have proprioception, and right ankle will turn in. Wearing AFO for support and I walk with a tripod cane. Wheelchair for long distance. Making progress, but I know recovery will be long.

    Left side can move well and is strong, but I have no pain or temp sensation, and no touch sensation. But I feel deep pressure and proprioception is normal.

    I take baclofen each day 30 mg, spasms only occur in the AM when I stretch out.

    I am just looking for fellow BSS patients to share their stories. One thing I really can't stand is the constant numbness I feel from the diaphram down. What a terrible feeling - all day each day. Does anyone have, or had, that kind of symptom and did it go away?

    I am in PT 2 times a week, including pool therapy which helps. I know I am getting stronger and those around me say I walk better, but frankly I don't feel any better.

    I know each of you is working hard, and I work each day is some way to get better. I really have not had much luck learing about this condition, but I think this forum will help. Your feedback is appreciated.

  2. #2
    I have BSS also. No, it dont get better. But perhaps, with your ability to walk, maybe this will get better for you. I sure hope so, anyway. Good luck with the rehab.....

  3. #3
    Senior Member kate's Avatar
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    Hi, Northpond

    My spouse also has BSS, almost 10 years post c-6. Your condition sounds very close to his & I'm sure he'd be glad to chat w/you. I'll make sure he sees this post.

    If you're interested, I wrote a book about our family's first year after the injury. (The cover is my avatar.) I'm sure there are used copies out there somewhere, or the CDRPF library has them to lend. It sounds like you've recovered quite a bit more quickly than he did.

    k

  4. #4
    Northpond, I'm Kate's husband. As she mentions, C6 injury from a skiing accident, ASIA D with Brown-Sequard syndrome. I spent about four years working to walk as well as I do. I use a cane and a AFO on my right leg. Lots of PT, and then I was in a locomotor training clinical trial at the University of Florida. More info on that here:

    http://sci.rutgers.edu/forum/showthread.php?t=47768
    http://florida.projectorguy.com/

    If you're not doing this yet, I strongly recommend it. You should also insist on overground walking training after each session. In Brown-Sequard people, the strong side can "teach" the weak side how to walk again, and I found the overground training essential to "cement" the learning in my nervous system. I don't know what part of the country you're in to suggest places you might find this.

    I would also recommend taking as little baclofen as possible. Early on I was taking 80 mg/day, but as I recovered I weaned myself off of it. I did better without it as I was learning to walk as it is a muscle relaxant and nervous system inhibitor. You should consult with your doctor about it, and also do a search on CareCure to learn more about it.

    You mention numbness in your lower body. Do you mean sensory numbness, or is it neuropathic pain? I have neuropathic pain in the parts of my body that are affected by my injury. It tingles like when my foot goes to sleep. I take gabapentin for it, which takes the edge off, but doesn't make it go away. Regarding sensory numbness, my entire abdomen did not have any sensation for a long time after my injury, even when my legs and feet recovered some sensation. It probably took two years to get to where it is now, not exactly normal, but not nothing either.

    Keep working at recovery, it is a long haul. I too have people who tell me I walk better if they haven't seen me in a while. About two years ago, I took a job in downtown Seattle, and I usually commute by bus and walk more than I ever had before. Even though I have been neurologically stable for about six years, I am stronger, but I have to keep walking to keep it.

    I wish you the best, and feel free to ask questions here. I've learned a lot here over the years.

  5. #5
    Bruce,

    Thank you so much for your reply. I will look over the information you gave me, and put it to the best use possible.

    The sensation I was referring to is that "falling asleep" sensation. No pain, but very uncomfortable and the feeling of being really bloated.

    I take a low dose of Baclofen too, 30 mg a day. I tried earlier to wean off it, but had real problems moving and had bad spasms at random. I'll stick with it for a while longer.

    Anyway, it's ironic for me. Had I not found tht tumor, I'd be in real trouble. Despite my loss of motion and sensation, I am actually healthier now than before - given that the tumor is gone. At least now I have a chance. That is my only way to deal with this.

    Good luck and stay active.

  6. #6
    Thanks for your response. I really hope I can work through this, and hope you can too.

  7. #7
    Senior Member Cjt8's Avatar
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    North pond- BSS as well four months post right leg bad left leg ok with no feeling. I have the tight band around the waist, man that is a real bitch. I backed off the Baclofen to 10mg a night and I'm paying for it a bit. The trade off is I'm getting more out of PT and working out. They say our first year or two is the most critical for recovery.

    Good luck to you

  8. #8
    Cjt8,

    yeah i had to wear that band too - what a pain. Stay in touch. Road will be long but determination must never wane. Working hard at PT too, including pool. Stronger but still need a lot of work on coordination and fine motor skill. good luck.

  9. #9
    Senior Member Cjt8's Avatar
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    Northpond - let me know how the pool PT works to help your right leg. Do you have total foot drop or can you pull up your ankle a bit?

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