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Thread: Getting KAFOs

  1. #11
    Your PT must work with those customizing your KAFO's. If provided with the incorrect KAFO's it will have a negative impact on your therapy sessions. This equipment is too expensive for a mistake to be made and a second request to your insurance provider for a corrected pair could easily be denied

  2. #12
    JenJen, please keep us updated on your KAFO progress. I would love to see pictures of them and videos of you walking in them.

  3. #13
    Quote Originally Posted by Faithful1990 View Post
    JenJen, Check out my son's HKAFO's they were specifically designed to digress as he gets more return so that we don't have to purchase new KAFO's, then AFO's, etc.. they are truly an amazing piece of cutting edge technology. He was walking in them first try and after only 3 weeks, they unlocked the knees to promote a normal gait pattern.
    He is able to put them on himself, despite how heavy they are. He can also stand from a seated position and sit from a standing position. Unfortunately, because of back piece, they must be worn over his clothes. When he progresses enough to have the back removed, they can be worn under his clothes. They make a clicking noise every time each knees engages, so he won't be able to sneek up on anyone!
    http://www.youtube.com/user/CalebsJourney
    Hi faithful1990,
    What is the name of those braces? I wear a locked kfo and would be interested in what your son uses. I am also a t12 incomplete, almost 6 years post injury. I use to wear a stance control which unlocked at the knee but it doesnt look like the locking/unlocking mechanism your son has. His looks like he can get a much smoother step than the one i use to have. My stance control was made almost 5 years ago but i do not wear it anymore ( i switched to a lock kfo after 2 years b/c the stance control was slowing me down and would sometimes buckle, not a huge buckle but enough to startle me) Thanks for sharing your video. Here is the link for mine which shows my old kfo. http://www.youtube.com/watch?v=0dneU_ZrF0E
    Last edited by Chelley03; 09-06-2009 at 12:43 AM.

  4. #14
    Quote Originally Posted by JenJen View Post
    Thanks for the info everyone. It will help me make a better decision.

    Willy, I do have some very faint movement at the knee. In the water I can swing my feet while in a seated position. It's very weak but definately there. Unfortch, I have two choices in providers, Hangar and Hangar. They are the only approved provider.

    I had not considered the knee joint so I'll work on that now. So, up to the butt is ok?


    Carolyn, Like Jessica, the original orthotist was going to put all the support in the front of the KAFO and now it's mostly in the back with my knee "strapped" (my word not their's) to keep it from collasping.
    • Am I going to be able to put these on by myself? I live alone...
    • Can I wear them all day?
    • Will I put them under or over my clothes?
    • Do I need cloth between me and the brace? I wear as little as possible without being arrested here in the summer. We're experiencing a delightful cooling trend with temps down under 110.
    Hey Jenjen,
    I wear a KFO that goes all the way up to my thigh and an afo. My KFO is plastic with 5 straps in the front to hold down the leg.

    *I am able to put them on myself. I pick up my left leg and put my foot in first b/c its the toughest part to get in. I can do it from my chair.
    *I do sometimes wear them all day.
    I have to wear larger shoes to prevent blisters. A whole size larger is what my PT recommended. I come to accept that my feet look long in them but who cares =) You have to try shoes out b/c you can tell a difference in walking. Nikes work the best for me. I have the same pair in 3 diff. colors b/c they dont give me blisters, sores, and they are great to walk in and still somewhat fashionable.
    *I wear those thin leggings (target sells them for about 6 dollars) before i put my brace on and then i put pants or capris over. I made diff. lengths ones by cutting them so if i wore capris you couldnt see it. I did that b/c i sweat in them big time. The plastic and my skin dont go well. It also helps prevent skin problems to have something inbetween. They are thin so it isnt as hot but the braces themselves can keep you warm.

    *You gotta do some trial runs with shoes and clothes to see what you will be most comfortable in. I use to wear mine on the outside until i figured out that i could wear tights or leggings plus the braces underneath my pants. Also, taking out the insole of the shoe gives you a little more breathing room for your feet. Anything to prevent the skin blisters is essential. I havent had one in a while which is a really good record =) Watch what shoes you wear and always check the straps, and your toes before you get up. Everytime i take off my braces i check out my entire leg b/c sometimes things are rubbing and you dont know.

    Good Luck and cant wait to hear about the good progress. Message me if you have any questions.

    -Chelley

  5. #15
    Senior Member arod636's Avatar
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    Jen Jen go as high as up to your hips as you can. I have kafo's and they came up to my mid thighs. I am a T-9 asia complete. I have some hip flexors. I got up to walking 100 feet with my kafos an a walker however in doing so I tore my labrum and dislocated my hip. Now I am in the hospital after going through hip replacement surgery. This is not something you want to go through just to stand an take a few steps. So get as much support in your hip as you can. Hope this helps...

  6. #16

    Exclamation

    Quote 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!

  7. #17
    Quote 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.

  8. #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.

  9. #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.

  10. #20
    I support Hangar.....they did a decent job on my KAFO's.

    JenJen - What did u end up getting?

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