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Brown-Sequard Syndrome

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  • #16
    Originally posted by BSgimp View Post

    I can relate since I also could not find a Neurologist that could understand my situation. They were all very ignorant about it. In fact I figured out that I have Brown Sequard Syndrome myself by doing research on the internet. Sadly, I never heard from any doctor that I had this type of unique injury.

    Ditto. I'm also self diagnosed.

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    • #17
      Over 20 + years ago ok exactly 1980 I took care of m grandmother who had a stroke and during my 4 year stint I took care of her & I learned a lot about how the loss of 1/2 body function
      She passed away and for some obscure reason a few years later .

      Several years ago I had a freak motorcycle accident and it seems like now I am sort o in a similar situation .
      Although I did not have a blood clot stroke like her I can relate to what it is like to only use 1/2 of my body .
      For what it is worth I say this from my heart you all are very lovely , special


      Thank you all; GL
      Last edited by GL; 05-23-2011, 06:07 PM.

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      • #18
        hi everyone,

        i'm c5-7 incomplete and have BS syndrome. i too self-diagnosed about 3yrs after my "event" i call it an event because my paralysis stems fron an infection that started at C4 and spread to t2 inside my cord.

        my left side is much stronger than my right. i have absolutely no hip flexors on my right leg but i wear an afo and mostly walk with a walker. i would lovew to use a cane or crutches but that would limit wwhat i could carry. my balance is not very good.

        i'm nearly 59yo and i am pretty content with my abilities however i would like to develop some core strength because that would improve my balance.

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        • #19
          Well I'm in a chair,and I have it...C2-C3 incomplete,right side partial paralysis,not able to use hand.My left side I can't feel hot,cold,or pain.The Dr.s always ask,do you have burning,tingling and I say stop right there,just put check mark in every box.I can stand up and move easily,but walking is too terrifying.when I fall I fall like a tree.I don't want to break neck again,I would rather die than go through that again( 4 months in hospital )it was torture.I will post my experience in a thread soon I hope.
          Gunnslinger8 We are rare.
          Last edited by Gunnslinger8; 07-30-2011, 03:45 PM.

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          • #20
            C 5-6 BS here, for 11 yrs. Was told I'd never walk again. After my laminectomy surgery, the Dr. said "What you can move 24 hrs. from now is what you'll have to work with." I'll never forget the look on her face, when at 24 hrs I said "I can move my big toe on my left leg."

            She said "Spasms." She literally jumped when I told her to watch, and showed her my big accomplishment.

            Did standard rehab, but lucked into an experiment at the Houston VA. They needed incomplete injuries to test out the muscle memory theory, suspending me over a treadmill w/ a PT at each foot, yelling "Kick, Beth, kick!".

            Most BS ppl have to work their guts out, walking doesn't come easy imo. YMMV. I never could walk totally unassisted, had to be touching at least a wall, I think b/c of proprieception. My left fingers tell my body where I am in space, or something. W/o them, like Gunns, I go down like a log.

            I'm a wheeler now that can walk a few steps, get in the tub, and my van etc. I got an autoimmune disease called Graves that acts up under stress. The body perceives extreme exercise as stress, so I have to watch it. Fighting the sci was actually easier for me, b/c by nature I'm a stubborn mule and a fighter. This weird disease that calls for me to chill is much harder for me to cope with.

            I can still scuba dive, darn it, and ride a 4-wheeler. Just haven't had the opportunity lately.

            Really, for me the chair is pretty low on my list of aggravations. I'm small, my chair was built for a 10 yr old, so I can get through doors.
            Blog:
            Does This Wheelchair Make My Ass Look Fat?

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            • #21
              That was the first thing that happened to me,I don't remember which toe,but when it moved when they asked they shouted out you have movement.I thought so what a big toe,but know I realize how important that was.
              Gunnslinger8

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              • #22
                I'm 2 1/2 post and also have officially diagnosed Brown-Sequard Syndrome. I'm a C4/T6 incomplete, thanks to 2 surgeries (1 year apart) + radiation treatments to remove 70% of a very large spinal cord tumour. My left side is weak: my right side is the BS affected side. I walk short distances with the aid of a forearm crutches or a walker and use a chair for distance/endurance. I was 1 year with no proprioception, but that returned completely. My dorsiflexion on the left was initially non-existent but is improving to the point that I have graduated from an AFO to a dictus (small ankle brace with elastic to raise the toe). My right has the loss of touch/pain/hot/cold & constant tingling. That too is improving to the point that I know when there is heat or cold, but it does not feel the same as it does on my few normal parts. Cool is exagerated to the point of pain, and extremely hot would only feel barely warm to me. I've had to 'learn' to walk both times following my surgeries and am continually seeing improvements. My left hand went from being practically useless to visually normal (it has only 1/2 the strength of my right, but my dexterity is almost normal). My left, hamstring, quads & calf muscles are also very weak, but I continue to see improvement from month to month provided I continue to work very hard and continue with at-home-physio and rehab once a week.

                Glad to hear others are seeing improvements many years after injury. I've gone from dependent for activities of daily living and transfers to full independence.

                Nice to know there are others like me out there!

                Corinne

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                • #23
                  Brown Sequard

                  I have the same condition. Right side has littl mobility and hard to bend at knee. Left has loss of pain and temp. One year post surgery t3-t7 to remove tumor/ependymoma. RIght leg wants to stay straight, and ankle can not bend. "gas pedal" move with right foot is impossible. Stiffness and numbness from chest down is horrible. Cannot not stand without AFO, right leg cannot stay is stable position, and knee hyperflexes. Ankle curls when I try to walk. With AFO can walk, but not long distances. Need walker for long walks.

                  Wish I was further along - but thanks to all for history of your condition, I will ask doc about the braces and walk aids.

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                  • #24
                    The best way to describe I tell friends is like when your arm falls a sleep,but the whole side.I want to ask you guys several questions that only BSS individuals would understand.I will only ask a couple for now.First,the side you aren't able to feel pain when you stub your toe,or something happens where your suppose to feel pain,do you feel an intense tingling followed by spasms.The second is the paralyized side sensitive side,do you have any swelling in your feet and ankle?I wonder if you felt like I did after you knew you had BSS I thought I was the only one,because even other people paralyzed I know and knew didn't or couldn't relate to the sensations.I always say my friends have a cool story to tell people when they talk about me.I am glad to know I'm not the only one with this wierd situation aren't you?We are a rare breed!
                    Glad to meet you northpond.will ask more questions later if you guys dont mind answering from GS8 if not that's ok.I know Betheny will,because she loves her GS8.
                    Gunnslinger8

                    Gunnslinger8

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                    • #25
                      Originally posted by Gunslinger 8 View Post
                      The best way to describe I tell friends is like when your arm falls a sleep,but the whole side.I want to ask you guys several questions that only BSS individuals would understand.I will only ask a couple for now.First,the side you aren't able to feel pain when you stub your toe,or something happens where your suppose to feel pain,do you feel an intense tingling followed by spasms.The second is the paralyzed side sensitive side,do you have any swelling in your feet and ankle?I wonder if you felt like I did after you knew you had BSS I thought I was the only one,because even other people paralyzed I know and knew didn't or couldn't relate to the sensations.I always say my friends have a cool story to tell people when they talk about me.I am glad to know I'm not the only one with this weird situation aren't you?We are a rare breed!
                      Glad to meet you northpond.will ask more questions later if you guys don't mind answering from GS8 if not that's ok.I know Bethany will,because she loves her GS8.

                      Gunslinger 8

                      Gunslinger 8
                      T-7-8 BSS, 5 years post:

                      When I experience pain, I flinch. I have not had a problem with foot or ankle swelling; but I do have issues with my right knee. I place more weight on my right side than my left (mechanically deficient left leg). The right leg lacks sensation

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                      • #26
                        yes, gunslinger. I have very similar sensations. I recall at the gym one day when the bike pedal struck my leg/shin and cut it pretty bad. When they dabbed it with alcohol prep, the whole leg tingled and went into spasm. Outrageous. Understood on the feeling of being asleep. I too sometimes think i am not doing enough but maybe that's OK - it can help keep us driven to do more. BTW have you had any experience with Baclofen? Doc is suggesting I go up on the dose, to help me get more range of motion and work thru the stiffness. I'll see how it goes.

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                        • #27
                          I was beginning to wonder where my fellow BSS comrades were.I got off Baclofen years ago.Do you take Soma,or Valium?What do you mean by not doing enough?
                          Gunnslinger8

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                          • #28
                            I do seated yoga for the stiffness. Have finally gotten to where the spasms aren't a major issue. That said, yesterday I was hauling/rolling/wagoning crap from my back yard to the curb for what we call Big Trash Day-Once a month, the trash ppl will pick up stuff that don't fit in their designated wheelie bins.

                            Don't remember what I dropped on my toe, maybe a table? On the numb but strong side, right on an ingrown toenail. That side does feel pain, it seems LOL. The resulting spazz also made my leg kick the dropped object so hard, it added insult to injury!

                            I went inside and told my 22 yr old slacker son that HE was in charge of cutting and hauling the mulberry trees (damned things grow like tree sized dandelions) down to the street. Amazingly, he did it!

                            I gave my treadmill to my oldest son, he uses it to exercise his boxer dog. That dumb dog gets on it and whines for somebody to turn it on. So it gets more use from Asher, but now that my broken ankle has healed I sort of wish I had the treadmill. When I move, I'll likely buy a smaller more compact one.

                            I need to exercise more. My arms are good since I have a dog to walk. My legs, though...On the weak side, it's withered to where you can see the screws that hold my titanium shinbone in. Eewwww. It's puke material, I told my son to come feel it, he refused b/c he could see it just fine from 15 ft. away.
                            Blog:
                            Does This Wheelchair Make My Ass Look Fat?

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                            • #29
                              In my situation I feel as if 1/2 a person
                              My whole left side is very messed up from this condition & I am a southpaw which only makes it 50% rougher .
                              Sincerely ; GL

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                              • #30
                                No do not use those meds, but will ask next time I see doc. By not doing enough, I just get real inpatient, and feel I need to push harder. Just me the way I feel and I am encouraged by the posts that describe what people do to stay active.

                                How long did you take baclofen? I take 80 mg day.

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