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What did it feel like when sensation and/or motor function came back?

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    What did it feel like when sensation and/or motor function came back?

    Hi,

    Me again, hoping that some of you may be able to share your experiences of what it felt like when you started to get return. For sensation, did you have pins and needles and/or numbness before return? Could you feel "inside" before the return?

    Also, for the feet was it a surprising feeling when you were able to move your foot/feet and did it take a lot of energy to do it?

    What was the timeframe post injury/surgery when you did get return?

    Sorry - I know these things are difficult to describe, but I'd like to give my husband some idea of what others have experienced. We're now almost in our 6th week post injury; he's c5/c6 incomplete B.

    Thanks everyone.

    #2
    I'll try to help, but its been four years now...

    I'm also C5/6 incomplete, walking, probably 90-95% recovered. As far as sensation goes, I remember more numbness than pins and needles. I have Brown Sequard syndrome which mean one side has better sensation, the other has better strength. My right side, mostly form my waste down, I have difficulty distinguishing hot/cold and pain sensations. I noticed this in rehab when they gave me shots on one side or the other. Otherwise, sensation is normal now throughout.

    For me, movement seemed to start with minor spasms. From there it seemed like I could make the muscles "fire" on occasion. The more I tried over time I could make this happen on demand. Eveything seemed very heavy. Lifting my leg, raising my arms, etc. all were very difficult. I regained my strength very slowly but surely. I was very lucky early on in that I had new "tricks" as my wife called them almost every couple days.

    My return started very early. There were noticable differences immediately after decompression and surgery. My prognosis went from poor to optimistic within the first couple weeks. I left rehab at about 5 weeks post walking with a cane. I was still very weak and awkward but it was far ahead of any timetable the doctors had given. I have been very lucky.

    I hope any of this helps. I worked very hard and was very fortunate at the same time. It sounds like he is getting some good return fairly early on, he can only do his part and try to maximize it. The rest he can't control. Good luck!

    Comment


      #3
      That's interesting....in my case, sensation was very numbed. When people touched my leg and I could feel it, it felt like someone was touching my leg through a blanket...not fine, normal sensation by any means. But I do agree with the previous poster's assumption that motor control is very heavy when it comes back. The sensation of trying to move a muscle or a limb is more like trying to lift weights. In other words, you feel yourself trying, but it's just like there's 50 pounds on the limb you're trying to move. Burning does accompany some return, so I'm told. Not with me, though.

      Good Luck!
      "Leela, you look beautiful. Incidentally, my favorite artist is Picasso."

      Comment


        #4
        what happened with me when i had some return was very much like what all of you had said. i'm a little over a year post injury, and after my first surgery i had tingling in my toes and after my second surgery i had fireworks in my fingers if that makes sense.

        i too have heavy feelings when i try to move my limbs, and i also get a feeling like a buzz sorta...it's hard to explain sometimes...when i touch certain parts of my legs, like a spot on my thigh, i can feel the exact same thing on my ankle or calf. if i swirl my finger or whatever, that's what i feel on the other spot too it's so odd. i also can't feel pain, but my feet are very sensitive to touch now to the point where they are hypersensitive and i can feel hot and cold.

        i'm an incomplete injury c6-7 and i have more return in my left arm and hand than my right and i can move my hand almost completely normally.
        don't give up!

        hope that helps!
        Never take life seriously, nobody gets out alive anyway

        Frank's blog:
        http://www.franktalk-scurry.blogspot.com
        My regular blog:
        http://www.ithinkithinktoomuchblog.blogspot.com

        Comment


          #5
          Thanks everyone, this is exactly the kind of info I was hoping to get. It's so hard to describe what something "feels" like. For example, my husband can "feel" the inside of his legs; the lower parts of his arms he can feel inside when someone really rubs hard and his fingers are numb. I think last night he might have been able to move his foot but he said it felt "weird" and was exhausting (but exciting). Also, maybe he feels pressure when he sits in his chair?

          I can't tell you how good it is to be able to relay what others have experienced though. This type of info is not something the doctors talk about at all, and it lifts his spirits I think to hear what others have felt - no one can know it except others who have gone through this I guess.

          Comment


            #6
            doctors...pfft

            here's the thing about doctors...as i'm sure you know, they're gonna tell you the worst. don't believe them, they're just covering their ass so they aren't liable should someone never walk again.

            yeah my ass burns somedays, with as much as he's changing in such a short amount of time, he'll be walking again i'm sure of it! if he can feel his butt then he'll have to worry less about sores...he'll feel when to move and hopefully he'll be able to move. and yeah, trying to move is tiring because you try so hard and sometimes you feel like you're gonna cramp up, at least i do.

            i can finally tighten my calf muscles after all this time, and when i think about walking it's so strange because i never expected to feel so nervous or scared about it. i mean, think about it, all of the sudden you can't walk and that's a big change in your life, then when you're finally able to walk (i'm not able to yet, but i'm just saying) it's another big change and to think of it you're so excited but you're scared at the same time. it's wierd. maybe it's a just too good to be true kind of moment i guess...we'll find out soon enough right?
            Never take life seriously, nobody gets out alive anyway

            Frank's blog:
            http://www.franktalk-scurry.blogspot.com
            My regular blog:
            http://www.ithinkithinktoomuchblog.blogspot.com

            Comment


              #7
              Brown-Sequard here too. I first moved one toe 24 hours after surgery. Lifting weights is a good comparison. Like the guys in the gym that really GROAN when they lift? That's what it took to move that toe and every thing since. And when you lift real heavy weights, get 5 reps and are too fatigued to do it again...that happened so many times. I'd lay awake in rehab, try with everything I had, get a flicker out of my quad. The next day I'd tell my PT but couldn't do it again, too fatigued. They didn't believe me for the longest time. I felt the muscles move inside long before I convinced anyone it was happening. I don't remember ever feeling one that wasn't eventually online.

              Sensation was always way off for me. I had nerve pain from the first second, I remember making them xray my arm (which was fine). The fingers started off the worst. Now the pain in my fingers is secondary to my feet. But it's all connected to my burning butt. Can't feel heat in my legs, unless you put something cold on them, then they're on fire. Can't tell where my bad leg is. The burning pins-and-needles...I used to think it was a good sign. Now it's just a cross to bear.
              Blog:
              Does This Wheelchair Make My Ass Look Fat?

              Comment


                #8
                Well Im not sure exactly what return you mean, but when I got bladder controll back a few weeks ago (YAY) I just woke up and It returned. for a few weeks before I had felt urges to pee, and I felt like I could ALMOST do it, if I could just get it started. Then one day *poof* I know thats probably not the way most people get return, but thats what happened. and suddenly cathing became extemely painful. I was exactly 2 years post when I started.
                Don't think of yourself as an ugly person, just a beautiful monkey.
                Always remember: if the world didn't suck, we'd all fall off.

                Comment


                  #9
                  Cali -- I loved the title of your message, made me laugh which not a lot does lately. Thanks for the encouragement too.

                  Bethany -- He says lifting weights is a perfect way to describe his efforts in moving right now.

                  ButtMonkey -- thanks for your message describing bladder control. Am very excited for you, and surprised to hear at 2 years out surprises like that are in store.

                  I've been worried lately because it seems like so many people get some return back w/n 24 hours of surgery to a week. For my husband, he had no return at all for a full 2 weeks post surgery! I don't know if that's unusual or not, but it was terrifying. I keep praying for his fingers to come back -- they are still just numb for him. I wonder if it's possible that there's still swelling even though we'll be moving into 7 weeks post accident?

                  On a brighter note, he can feel me touching him to the mid-chest region now whereas a week ago it was still above the nipple line. Also, he keeps trying to move his feet and toes and when he tries he says it feels like electric shocks shooting all the way down the legs. Don't know if that's good or bad, but it's something.
                  Thanks everyone --

                  Comment


                    #10
                    Hi! I just read your post and wanted you to know that my son was injured 1 year ago this June and he is just starting to move his right fingers! It took a whole year and things are happening with his right hand. My son has played alot of poker and has always forced himself to "work" his hand. I am convinced that this has helped his return. He just recently went back to college and takes all of his own notes - did not want any help. Don't give up and don't listen to the doctors!

                    Comment


                      #11
                      Brown Sequard

                      Hello;

                      I have Brown Sequard. A Dr. cut my spinal cord during a heriated disc surgery.

                      I was able to move a finger....like it was a million pounds after a week and half or two.
                      Prior to that, I couldn't even find my fingers. I could see them and my foot, but I couldn't find the connection to them. It was the oddest feeling.
                      It was like they weren't part of me.

                      I am seven years out now. You'd never know anything was wrong with me.
                      It was a slow recovery. I left the hospital, after a month and a half with a four prong cane. I spent a year and a half in physical therapy 3X per week.

                      After a few months I was on a single prong cane. I used a cane for several years. I also used a leg brace, for my drop foot.

                      I absolutely agree with the other poster who said not to listen so closely to your doctors. They do tell you worst case scenarios. I was told I may never walk again. My right side was completely paralyzed.
                      But, I REFUSED that diagnosis.

                      I did feel sorry for myself for too long. I tried to focus on getting better.

                      Here are my long term effects...........

                      One biggie is not a lot of people know how to handle me. When I tell a DR. I have Brown Sequard, they give me a deer in the headlight look.

                      It was scary during my first pregnancy, but between this website and the Miami Project, I was able to notify my OBGYN of possible complications that could arise. Everything went smoothly though.

                      I am practically cut down the middle, nerve wise. I have lack of motor on my right side. Weakness in my right hand. I hold my fingers closed most of the time. I am constantly using my fist to open doors or to push myself up.
                      I have drop foot. I got use to it. I don't use a cane or any other devise.

                      I can't run. I can get up off the floor by myself now...I couldn't at first.
                      I walk without assistance. I wore chunky heeled shoes last year...and boots.
                      I can't wear high heels. I started to wear flat sandals this year. Woohoo
                      I wore sneakers for years, as my only shoes! No more!

                      I have lack of sensory, on my left side.
                      At first I had burning down my left side. I still do, but either I am use to it or it's tuned down. I hated people to touch my left side...hypersensitivity...that too has lessened and it's okay.

                      I don't feel hot or cold on the left. I don't feel pin pricks either. Just dull.

                      I misread other sensations also.........such as stepping in water...or getting a drop of water falling on my leg. That feels painful.
                      I have to be careful, as I don't feel muscle pulls(which is why I came on to post today)

                      My sensation on the left side is very similar to the person who said about the blanket. I always called it rubber. It's like my left side is covered by a thick layer of rubber. I can feel someone touch me, but it's far away.

                      My sexual self has changed. I have lack of sensation on one entire half down there. Even on the inside.

                      My lack of sensation starts above my left breast and goes down to my foot.

                      I don't take any regular medications any more. I took Baclofen, Neurontin and many others. I weaned off of all of them. The night time spasms are much less and really rare now. I keep Baclofen on hand, if they bother me.

                      There's not a person who meets me, who would have any idea I have Brown-Sequard.

                      I sometimes forget myself............I often feel muscle pains on my right side and will think, "huh, isn't it weird that my left side isn't effected" Then I remember again. Or I'll be barefoot an step on the cold floor, with my right and then my left. I'll think, "huh, isn't weird that this side of the floor isn't cold?" For whatever reason, my brain doesn't get used to that change.

                      When I have dreams, I am the girl I was before. Not the girl with these issues. I've noticed that.

                      I always try to remember how things could be much worse. Although, I use to hate people telling me that....because they felt pretty bad when it all happened. I didn't feel very lucky. But, now I understand what they meant.

                      Good Luck with your recovery. Keep the faith.
                      They say after two years the recovery stops. NO WAY! I am still getting better and stronger. I live with this and I don't think about it....until I notice something I can't do or my feelings are off. But, otherwise it becomes who you are. I forget about it and so does everyone else.
                      So, keep the faith.
                      I believe your thoughts can manifest in your body.........so be positive about the outcome.......and never stop trying.
                      jo

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