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  • #16
    Originally posted by JenJen View Post
    I'm currently living a life very much ruled by Mr. Murphey's law, so I really REALLY need this one thing to go right. Seriously, I can't take much more of this crap storm.

    I have been approved for KAFOs. I'm a T4 ASIA A, 4.5 years post, I have some hip flexors and I have small gains in many places.

    I was cast yesterday for my KAFOs but there was a disagreement between the Hangars guys and I'm looking for some input here so I don't end up with thousands of dollars of useless graphite....

    The first guy was casting me up to about mid-thigh and selected a light-weight brace with drop locks at the knee. Then the other guy decided he was doing it all wrong and I'd never be able to use them. He chose a different style of brace, still lightweight with drop locks at the knee but he cast me all the way to my butt. These will be full leg braces, still light enough to swing but supposed to provide more stability. He also said, they'll be hot to wear -- I live in Phoenix.

    My plan is to use the lite gait at a nearby rehab gym and hopefully, take a few independent steps (with crutches or walker) at the finish line of this year's marathon.

    At this point, I don't know enough to discern who's advise is more beneficial. But they kinda scared me with a long lecture about how hard they would be to use and how no one ever really uses them and I'd have to sign a commitment for the braces.

    All I know is had I had more experience, I wouldn't be sitting in this wheel chair, I don't want to make the same mistake with my KAFOs since this appears to be a singular opportunity.

    KAFO's all the way up to the butt or mid-thigh? Any input?

    TIA
    Hey Girl; I'm not an expert, nor do I play one on TV... Both myself and my daughter have been through the Hanger Store; now known as the Walmart of orthopedic appliances; RUN!! Or at least wheel as fast as you can in the opposite direction and find a new real orthotist that works for himself; and especially you! I had a conversation with a member of the 6 member Medicare Board, he too is an orthotist in business for himself; he has seen and heard the stories of their shoddy workmanship. You haven't experienced anything different than we did when we were foolish enough to spend our money with them. Most often our stuff cracked or unraveled within days of receiving it. You are at the high end of the price scale with carbon fiber, which can't be easily adjusted; only remade. Just a word of caution... You could get KAFOs with a leather thigh and calf cuffs that will enable you to get a SMO insert or your shoes of plastic.(you won't sweat as much either) I think they smelled your money at the onset; rethink your purchase before you sign on the dotted line!

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    • #17
      Originally posted by fescueblue View Post
      Hey Girl; I'm not an expert, nor do I play one on TV... Both myself and my daughter have been through the Hanger Store; now known as the Walmart of orthopedic appliances; RUN!! Or at least wheel as fast as you can in the opposite direction and find a new real orthotist that works for himself; and especially you! I had a conversation with a member of the 6 member Medicare Board, he too is an orthotist in business for himself; he has seen and heard the stories of their shoddy workmanship. You haven't experienced anything different than we did when we were foolish enough to spend our money with them. Most often our stuff cracked or unraveled within days of receiving it. You are at the high end of the price scale with carbon fiber, which can't be easily adjusted; only remade. Just a word of caution... You could get KAFOs with a leather thigh and calf cuffs that will enable you to get a SMO insert or your shoes of plastic.(you won't sweat as much either) I think they smelled your money at the onset; rethink your purchase before you sign on the dotted line!
      You keep pushing for leather straps on orthotics (or even the old, metal braces) and it's just not done anymore as good medical practice, Fescue. What's up with always pushing for the old braces from decades ago?

      No, they do not work better and yes, the leather straps can cause major problems. I know because I wore those for years until better options arrived. I was in college when I had velcro hook and loop straps. Ahhhhh, relief! It made such a difference.

      Plus, you have additional weight with leather and it is not as adjustable, not as custom. That extra weight might not seem like much, but every little bit matters.

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      • #18
        Thanks for the input but it's a little late. I've been using the braces for a while now. They seem fine to me but I have no frame of reference otherwise. Personally, I've had no issue with my local Hager folks. They've been really, really good actually.
        My blog: Living Life at Butt Level

        Ignite Phoenix #9 - Wheelchairs and Wisdom: Living Life at Butt Level

        "I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit."

        Dawna Markova Author of Open Mind.

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        • #19
          I'm in the market myself to be getting some KAFO's. Any other tips or idea of things to take into account. I'm a T6/T7. My insurace will only pay for braces or a standing frame. I figured I would go with the braces and it would be my standing for the day.

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          • #20
            I support Hangar.....they did a decent job on my KAFO's.

            JenJen - What did u end up getting?

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            • #21
              hanger was great my braces 11,000 i had to pay2100 they told me if i couldn/t they would eat it so i am making payments

              i love it

              i am a quad how many quads are walking with these types of braces i dream of walking
              shopping with these

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              • #22
                Originally posted by LaMemChose View Post
                You keep pushing for leather straps on orthotics (or even the old, metal braces) and it's just not done anymore as good medical practice, Fescue. What's up with always pushing for the old braces from decades ago?

                No, they do not work better and yes, the leather straps can cause major problems. I know because I wore those for years until better options arrived. I was in college when I had velcro hook and loop straps. Ahhhhh, relief! It made such a difference.

                Plus, you have additional weight with leather and it is not as adjustable, not as custom. That extra weight might not seem like much, but every little bit matters.
                LaMemChose; I never thought that allowing a person to obtain more information about a particular device or proceedure could be so controversial, especially when they are seeking advice through an open forum from other users. Fortunately this isn't the only forum which the world spins around, JENJEN was looking for opinions so that she could make an informed decision about her future. When it it comes to being put in a position like this, whether its a parent posing questions about their child, or someone much older; an informed choice of all available options is best. I am not in a position to push one thing or another, nor would I want make that leap. Being disabled for 29 years of my 52, raising a daughter with special needs; and finally having a wife who has taught Special Ed for over 25 years provides me with a broad window of experience to fall back on. We as a family have been told by therapists, orthotists and physicians, that 20+ years ago some orthotist came up with idea of using poly for appliances. The billing codes established allowed for a substancially larger profit margin vs conventional methods. Why wouldn't anyone in the business want to make more money for less work? With these "new" methods came their own set of problems contraindications, some of which are ignored on a daily basis. Fact is that what works for one, may not work for another; treating everyone the same because of a bottom line seems to be the statis quo. Suppose every disabled driver had to drive a white car to identify them as a disabled person, I imagine that wouldn't set too well? In many cases orthotists who work under another owner, are told right off what can and can't be made for a patient. This eliminates a patients right to freedom of choice, is it right; no. Companys like Hanger went accross the country buying up orthopedic labs years ago, placing a monopoly in effect; you get what they want you to have. Where did I get this info; from a Hanger manager. Give everyone that needs a choice, the information they need to make that choice correctly; it will have an effect on the rest of their life.

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                • #23
                  To Jen Jen, i received my KAFO"s 4 months's after my injury. I had only VERY slight hip flexors, but my PT mentioned them, said they require a enormous amount of energy, (i didn't care) so i had a place in Pomona called J and K Orthotics make a pair. I was the second one on the west coast (5 years ago) to get the type i got. The "knee joint" was brass and locked and unlocked off a pendulum. As you put weight forward they would unlock, and when you finished the step they would lock again. Not 100 percent reliable to stay locked so i used a walker i could brace my forearms on. They helped me a ton! Yes, it used a bunch of energy but it was well worth it, and i now wear a AFO made by the same place. Lance, the owner of the orthotics business is extremely cutting edge and i would recommend him to everyone who needs orthotics. i now walk with a cane and my Afo's that have a "hinge" at the ankle joint. The hinge is made of a strong "gummy worm" type of material, i have been wearing them for over 2 years and they are still in excellent condition. Very comfortable.

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                  • #24
                    Hi Everyone Can someone tell me where i can get some leg braces with drop locks in Sydney , Australia as i'm looking for a set that i can use so i dont have to rely on my wheelchair all the time

                    hope to hear a reply back soon

                    Kal

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                    • #25
                      hello everybody i just wanted to know how many different kind of KAFOS are out there for me im a t12 para 4 yrs post injury im looking forward to getting some but dont know where to start thanks guys

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                      • #26
                        Originally posted by Israel View Post
                        hello everybody i just wanted to know how many different kind of KAFOS are out there for me im a t12 para 4 yrs post injury im looking forward to getting some but dont know where to start thanks guys
                        I would recommend you talk to someone at your local Hanger orthotics.
                        http://www.hanger.com/Pages/default.aspx they'll know what is
                        available for you. Depends how much activation you have.

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                        • #27
                          I am a T 7-8 incomplete. I was fortunate that my insurance covered my first and second set of KAFO's. The first prescribed set was not beneficial at all. As a result of this experience I asked my physical therapist and the representative from Wright & Fillipis to collaborate on a set of braces that would be conducive to my therapy and recovery. Turns out it was the best decision I ever made. As a result, as I progressed the braces were modified to AFO's and eventually through a lot of therapy and recovery they were eliminated.
                          Entrusting everything to the ortho representative is not a good idea as their main focus is sales and profit.

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                          • #28
                            Kelrod is correct. Bracing should involve more than just the orthotist. Bracing needs to count on progression and or recovery. I have said before that braces are not inherently bad nor do they intrinsically teach an abnormal pattern (the gait pattern, along with sensory/motor function became abnormal when the injury occurred). On the other hand a therapist, trainer, or orthotist just looking to brace or uneducated on orthotic progression are. In my opinion, gait training with orthotics is only one component of a program. It should not be viewed as the only component (the same goes for body weight supported treadmill training). There are 6 determinants of gait that need to be taken into account (pelvic rotation, pelvic tilt, knee flexion, knee mechanics, foot mechanics, and lateral displacement of the pelvis). At any given time an individual determinant could be selected as the target of treatment (and not necessarily at a gait level). In general you need to minimize vertical displacement of the center of gravity (conserve energy). As soon as you lose two of the above determinants you are going to have to work hard during gait training. I have attached an old article that explains major determinants of gait in more detail.

                            http://www.ejbjs.org/cgi/reprint/35/3/543
                            Last edited by wildwilly; 06-06-2010, 10:05 AM.
                            “As the cast of villains in SCI is vast and collaborative, so too must be the chorus of hero's that rise to meet them” Ramer et al 2005

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