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Will I be successful with KAFO's?

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    Will I be successful with KAFO's?

    This might be an odd question but I am going to ask anyway. I am a 26 year old T12 incomplete para going on five years. I have recently started trying to use KAFO's however, I still have very severe spasticity even with medication. What are the odds that I will be able to use the KAFO's for decent intervals of time? Also, how would you advise me to handle a parent that believes that the KAFO's are going to be the cure all regardless of the spasticity? I know that if things don't work out and I am not able to use them for the duration of time that they think is acceptable, I will be told that I didn't try hard enough. Trust me, that is the last thing that I need to hear. Obviously, I wan't to be able to walk. Honestly how stupid do I look? Thanks so much for answers or advice.

    Becky
    T8-9 according to latest scoring.......
    since 1/3/04

    I am the best at being me. No matter how that happens to be!!

    #2
    Hi,

    I have limited knowledge of KAFO's. Do yo have a PT or therapiast that you are working with? Here is a thread that discussed these and other similar options. Perhaps someone using them can give their opinion.

    /forum/showthread.php?t=61983

    Regardless, any orthotic device requires that it work for the individual person and be compatible with their physical and motivational state.
    I hope that you are doing this for you and that some of the outside pressure is taken off you.

    Keep us posted.

    AAD
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

    Comment


      #3
      bc, my son has used kafo's since a year post injury. He has improved in walking, stance and gained (or awakened) some motor skills/control. In truth, they so seem to be limiting him now for the past year or more, meaning a lesser, lighter brace could offer him more natural mobility and an easier time doing so.
      But anyhow, my point is that at his t5/6 inc. level, he has spasms/spasticity that causes problems with balance, etc. every so often... being tired, not being stretched (warm up rom's) enough, baclofen, etc. seem to play their part. I'd advise as parent for you to use them as a part of your physical therapy at the very least. IMHO, one never would look stupid wanting to walk, however they are able to do so. It may come easy, or it might be tough so just do what you can without overdoing it... btw, people will be curious, use it as a teaching tool with those who don't know, understand or never seen.
      "I want to make a difference! However small it may be~ as long as it's a positive one, then this is what my life will have been about and I will go knowing I did my best.~ T.

      Comment


        #4
        AAD and teesieme,

        I am seeing a therapist three days a week and they are working with me. I am going ahead and trying them definately for myself. I just dont know the outcome that is going to come of it and other people around me are expecting a miracle. Also as far as my spasticity goes, the spasms are constant while in the braces which is what is adding difficulty to the situation. Thanks for the thoughts.

        Becky
        T8-9 according to latest scoring.......
        since 1/3/04

        I am the best at being me. No matter how that happens to be!!

        Comment


          #5
          Hi Becky, I've had my KAFO's since about five months post injury and I'm about 13 months post now. I've been able to use them for an hour straight with a walker. For me they are not something I would consider for getting around the house or getting from point A to point B. I do consider them good exercise and a way to put pressure on my leg bones. I have varying degrees of spascticity. When I use the KAFO's I usually go through a period where the spasms will make it hard to get a leg to swing forward or my hips pull to one side which can make me think I'm going to hit the ground. Usually about a half hour into being up and moving around it gets easier. I am not at a point where I can get around without supervision and there are a lot of things that I need to figure out to get anything more than exercise out of them. But this may eventually change. Good luck with whatever you try and if you want to hear about suggestions for questions to ask or what options you might consider with the KAFO's I'd be glad to help.
          Injured 7-22-06, T-11 T-12 complete. [Holds up cardboard sign] "Will work for returns."
          2010 SCINet Clinical Trial Support Squad Member
          Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

          Comment


            #6
            You might be interested in the Biones L/300, this new device could possibly replace the kafo and help with tone. Check out the exercise link and you will find more info.

            Comment


              #7
              While the standing & walking is good for exercise, I don't think its going to be terribly practical for all day community ambulation. Using a chair is much more functional & energy efficient. See how it goes by all means but don't beat up on yourself or let anybody beat up on you if it isn't practicle

              Comment


                #8
                Everyone is different and that is hard to predict but it is possible for the KAO's to lessen spasticity in some people.
                You need to stretch before hand and build up your wearing time. Continue to work with the therapist and consult your doctor about the spasticity to see i adjustments can be made in your meds.

                CWO
                The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                Comment


                  #9
                  CWO,
                  I am definately planning on talking to my MD about the meds. I am already on the max dose of baclofin. What other types of options do I have other then intrathecal? It really creeps me out to be having something inserted into an already touchy area.

                  Becky
                  Chicago, IL
                  T8-9 according to latest scoring.......
                  since 1/3/04

                  I am the best at being me. No matter how that happens to be!!

                  Comment


                    #10
                    Zanalex helps some, Neurontin helps pain and spasticity. Do you stretch several times a day esecially before using the KAFO's? Standing can help spasms and spasticity.

                    CWO
                    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                    Comment


                      #11
                      I have been on neurontin but didn't help much at all. I stretch for almost a half an hour before using the KAFO's. When I attempt standing it actually worsens my spasms/spasticity. Is that odd?

                      Becky
                      Chicago, IL
                      T8-9 according to latest scoring.......
                      since 1/3/04

                      I am the best at being me. No matter how that happens to be!!

                      Comment


                        #12
                        Of course we're all different, but when I 1st started using kafo's a few months back, my legs went crazy. My feet would lift off the ground, shake and made everything dangerous. I learned in the parallel bars and gradually got stronger to the point where it isn't too bad at all. I've actually dropped my baclofen dose. If you can get your hands on some type of motomed bike, it helps a lot to spin your legs before you use them.

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