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Can I safely stop wearing my AFO's (ankle braces)?

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  • Can I safely stop wearing my AFO's (ankle braces)?

    I have been in a wheelchair for all my life because of spina bifida. When I was a child, my legs(and especially my feet) were badly deformed. I have had surgery on both my feet to correct their position and I have been wearing KAFO's till I was around sixteen years old. Both my legs are in much better shape now! I currently only use much smaller AFO's.

    I'm pretty annoyed about my ankle braces though. I'm the only one in my wheelchair basketball team that's using leg braces and they are extremely obvious when I'm wearing my team shorts. Finding pants that disguise the shape of my braces is very difficult and finding nice shoes that fit my ankle braces is almost impossible. Because of this, and considering my age, I'm considering to stop using my AFO's. I permanently use a wheelchair so this shouldn't make a difference.

    I still visit my orthopedist twice a year and, off course, I also discussed this with him. My orthopedist adviced me to continue wearing my ankle braces though because there might be a chance that my feet could grow inward again.

    Does anyone have any experience with this issue?

  • #2
    How old are you now?
    Roger
    Sumus semper in excretum sed alta variat!

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    • #3
      Hi!
      I am twenty years old

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      • #4
        I walk and my feet are pretty deformed. The braced made me a little more stable but at the expense of a great deal of increased pain and blisters...which made me much less mobile. Ditched the braces, fall more, but I also walk more. If the braces don't actually help your mobility then I don't see why you should have to wear them unless you feel it is beneficial. If you walk some at home you might consider if you can still get around without them or if it would actually bother you if your feet had increased problems if you stop wearing the braces. Always trade offs and usually the doctors pick the trade offs that make you seem more "normal" not necessarily functional.

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        • #5
          Thanks so much for your helpful answer Izzy!

          I am paralyzed from the waist down so my braces never helped me to walk. I haven't got any feeling in my legs and I have always been wheelchair dependent.

          My legs(and especially my feet) were severely deformed when I was a child. I had surgical treatment on both my feet when I was around six years old and I have always been wearing leg braces since then to help my legs grow to a 'normal' position. Luckily, my legs are pretty well aligned nowadays!

          Luckily, my braces never caused any blisters or irritation on my skin. I think I have always been very lucky with my orthotic practitioners(both in Belgium and in the USA).

          The main reason for me to consider discarding my braces is because they really limit my choice of pants and shoes. I also think they look terrible when I'm wearing my wheelchair basketball team shorts. I just don't want to be dependent on them anymore.

          On the other hand, I also heard that there is a very small chance that my feet could deform excessively again. Needless to say, I really don't want this to happen.

          Did your feet deform excessively when you stopped wearing your braces Izzy? How old where you when you decided to discard them for good?

          Thanks again for your great advice!

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          • #6
            Hi Wheely, I mostly stopped wearing braces in oh 5th or 6th grade? I only ever wore them at school and to physical therapy after about 4th grade anyways, the rest of the time I was a barefoot wild child I had a heel cord release and calcaneal lengthening at 16 and was told I needed to wear a brace for 1 year after the casts came off to allow the bones to heal. I wore rhe brace for exactly 1 year and have not worn one again (now 26) except for a few, short misguided weeks when I decided to try a new type of brace. My feet are deformed but they didn't get worse just because I stopped wearing my braces. They got worse while I was wearing my braces, which was part of the problem! No matter how much they braced me, the deformities just got worse. I am not a doctor of course so I can't tell you what to do. I no longer do any sort of intervention unless it will actually improve my quality of life, which for me is really about decreasing pain. I don't care how my feet look but some people do so if you feet looking a certain way is really important for you, then consider carefully if you are willing to take the risk of not wearing the braces. We are planning to adopt a special needs kiddo (or kiddos) in the next year or so and honestly if they aren't walking at all and there is no real prospect of them walking I won't bother with braces.

            I took a risk with my last foot surgery that I could loose what little functionality I had in the foot. The doctor was nervous. He was really freaked out that I requested the surgery, to be honest. But I knew it might not turn out well and made my peace with that. Just make sure you are as informed as possible about any medical decisions, know the risks, and make your choice based on what is important to *you*. Sorry for the long winded reply, but I know that your early 20s can be a difficult time, when you have control of your medical treatment and now are expected to take responsibility for the outcome!

            As a (hopefully) humorous aside, my mom had kept my braces from the time I was a baby on up, like some parents keep their kids baby shoes as momentos. My baby braces were so tiny and cute. I hated wearing my braces so much that when I was in 4th grade I took the entire box of the saved braces and the ones I currently had and used my dad's electric drill on them until they all fell to pieces. I wish I had my little itty bitty baby braces now but that was probably the most liberating moment of my childhood!

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            • #7
              When you're a total non-walker, as I am too, the only reason for bracing that makes any sense is to prevent your feet from deforming to the extent that wearing shoes becomes an issue. But if the braces themselves already make shoes difficult/impossible they are rather pointless. In fact regularly wearing good shoes instead of braces would probably be just as effective to preserve your foot shape.
              An alternative worth considering is to simply have the ligaments cut that would cause your feet to deform. Both my achilles tendons were cut at a very young age, even before I started walking.
              Roger
              Sumus semper in excretum sed alta variat!

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              • #8
                Heey Ziggy,
                How unusual that your leg braces worsened the malformation of your feet, instead of improving it. How could this have happened?

                I must say that I have been pretty lucky with the outcome of most of my treatments. The only 'horror-story' I have was a nonhealing surgical wound on my left foot. The wound got infected very badly and it took several months for it to heal. The only thing which reminds me of it though is the big scar it left.

                Luckily, the outcome of both the surgeries was very good. Afterwards, I always wore my AFO's very faithfully. I also used KAFO's to correct my knocked knees. The knee bracing hasn't been 100% effective, since my knees still bent inwards a bit, but they also didn't get worse. My feet have grown to an almost 'normal' position.

                What a great plan of you to adopt a special needs child! I'm sure he or she(or they) will be in great hands! You really shouldn't apologize for your long winded reply, I am actually very happy with the effort you guys are taking!

                I'm having an appointment with my orthopedist in three weeks from now, so I will surely let you know what we discussed!

                I think you guys are absolutely right though. I'm really not planning to wear my braces indefinitely so maybe, now would be a good time to discard them. My feet might deform a bit again but I think I prefer this well over the constant wearing of leg braces.

                What kind of shoes would you think would work best for preserving my foot shape, Dodger? I was actually hoping that I could start to wear something fashionable without the hindrance of my braces

                Thanks again for your great advice and the effort you guys took advising me! I'm really trying to make the right decision here...

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                • #9
                  Hey Wheely, I think you were responding to me in the first bit of your post (autocorrect fail). My braces didn't make the deformities worse (at least I don't believe so) but they didn't stop them from getting worse and weakened the muscles in my calves because of the type of braces they were using. I have some underlying issues that were causing the deformities to worsen and those issues were not fixed/weren't fixed properly/weren't fixed in time so my feet would turn regardless of the bracing which just resulted in the plastic cutting into my feet and toes. My feet would be perfectly straight if the one doc had not completely botched a surgery on me so I am pretty jaded on this stuff!

                  On thought to find some middle ground for you with the braces would be getting custom shoes if you can afford them. You could take to your brace person about getting the smallest, thinest brace possible and get custom shoes that are made to fit with the braces. I have looked into custom shoes and its just too pricey for me to justify while in grad school but once they make the initial mold for the shoes, subsequent pairs are cheaper.

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                  • #10
                    Hi Izzy,

                    My autocorrect most have thought you were Ziggy Marley or something

                    I'm sorry that the surgery on your feet didn't work out. I can really imagine your frustration regarding this! When you undergo something as drastically as a surgery, you hope for (and expect) a good outcome. On the plus side, you are still able to walk!

                    My current leg braces are actually quite small already but I still have problems fitting my shoes in them. I have never been able to solve this problem, although I must admit that I have never tried the orthopedic shoes you're talking about. I am actually hoping to discard my leg braces entirely(so I can finally wear shorts without visible bracing) but I will surely keep this in mind for my appointment with my orthopedist!

                    Do you know anything about fashionable orthopedic/ custom made shoes?

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                    • #11
                      There were not many places doing it when I last looked into custom shoes but I would definetely google. The places that do it are often making shoes for business people and some have more or less experience doing the shoes for people with significant foot issues. Generally since they are custom you can really work with the person making them to get the look you want. If I remember correctly since none were anywhere near me I would have had to have an orthopedist make molds of my feet and the first pair of shoes would have come to between 800-1200 total. So a pricey investment! At one point I had very short braces that were not really visible outside of my shoes. You can also get your braces colored (usually you have to pay extra) to match shoes and make them less visible. Good luck in finding something that works for you!!

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                      • #12
                        Hello Izzy and Dodger,

                        Now I remember why I always hated hospitals so much . The appointment that I planned with my orthopedist for the 28'th of October has been postponed for two times. Such a mess 

                        I finally had my check-up last Monday. Blood levels, kidney- and bladder function were okay(as always), my blood pressure was a bit too high. Not a big deal though, according to my orthopedist.

                        A bit sad that my feet are pretty swollen since a while again. Fortunately, this is only caused by some recurring inflammations due to the inactivity of my legs. My orthopedist adviced me a special pair of compression stockings. They should be really helpful, I've been told.

                        The X-ray revealed nothing spectacular. I've always had 'moderate scoliosis', but it hasn't worsened for a very long time.

                        Off course, I talked with my orthopedist about my wish to stop using my AFO's. I explained all of my arguments and point of view.

                        I must say, my orthopedist responded really great. He really took his time for me and told me everything I wanted to know.

                        I have had surgery on both my feet at a very young age because of severe 'equinus deformity'. This deformity already manifested itself before I was born. After I was born, this malformation only got worse.

                        Both my feet are pretty well aligned nowadays, but especially Equinus Deformity seems to have a very large number of recurrence.

                        I'm afraid that my feet are very weak, because as soon as I have an inflammation and they get swollen, they start to bend in every direction in a matter of days



                        I now totally understand that stop wearing my braces isn't an option for me. I have heard of deformities which got so awful that it wasn't even possible anymore to wear shoes...

                        I also talked about the possibility of exchanging my AFO'S for Orthopedic Shoes. This seems to be very difficult because of the state of my ankles.

                        I'm very disappointed that my feet aren't in such a good condition as I thought they were. On the other hand, I am very happy for all of the information that everyone has provided me with!

                        If anyone has any tips/ advice for nice shoes that match with AFO'S, I would love to hear from you guys. I currently have a nice pair of Nike's and a pair of Pumas, for daily activities. I have never succeeded in buying a nice pair of classy shoes for special occasions

                        I'm also thinking about getting another pair of AFO socks, maybe in another color. My wheelchair basketball shorts are red/white.

                        Does anyone know a good webshop for Orthotic socks?
                        Last edited by Wheely1996; 11-10-2016, 10:47 AM.

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                        • #13
                          I have never succeeded in buying a nice pair of classy shoes for special occasions.
                          BTW,
                          This remembers me of a very funny(but at the moment embarrassing) story;

                          A doorman at a nightclub tried to deny my entrance once because I was wearing sneakers
                          I had to explain everything to him before he let me in :')

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