Started Pt Today, May Need Afo’s, Advice Please

    • Anonymous
      February 8, 2007 at 4:24 pm

      Hi Family,
      I went for an evaluation today prior to starting physical therapy and I was told that I lift my feet up and plop them down and I’d walk better with AFO’s, so one of the times I go, I’ll see someone about being fitted. I have never seen myself walking and my feet are so numb that I can’t feel what I am doing with them, but I think I can sense it. Maybe I didn’t have such a great and wonderful neurologist because he never told me I would walk better with AFO’s, ALL THIS TIME WASTED BY NOT TRYING THEM, GRRRRRRRRRRRRR!!!

      Now, my new neurologist, that I just saw once so far, did tell me that I have drop foot and the PT clinic will call him.

      How difficult is it to adjust to wearing AFO’s and what should I look for in a good fit? If they hurt me, should I just have them adjusted or ask for another kind? Is there one kind that is more comfortable for a good fit? I have a big problem finding shoes/boots, need xx wides and velcro, but I am starting to get my hands to lace up. Any recommendation for a good shoe/boot that will fit over AFO’s.

      I’m a newbie to AFO’s, now I need advice.

    • Anonymous
      February 9, 2007 at 4:21 am

      Hi, Liz.

      I have foot drop in both feet and also lateral instability in the left. Problem is, I also have a good bit of muscle atrophy in my feet and ankles, and have problems with some of the plastic AFOs. So I wear soft AFOs with lots of velcro so I don’t have to try to tie or buckle them. The soft ones also allow for more normal movement when walking.

      Since my foot drop’s not bad, I wear a soft figure-8 splint on the right: this is a stretchy sleeve that fits around the foot and around the ankle, and has a strap that goes from the ankle, wraps around the foot, and goes back up to the ankle, forming a figure 8 and keeping the foot from dropping.

      On the left I wear a Bioskin Trilok. Like the figure 8, this is an ankle sleeve with two figure-8 straps, but also has another strap that wraps around the foot and pulls up to fasten to the outside of the ankle, giving lateral support.

      For shoes, I wear a boy’s shoe with very flat, wide soles and velcro fasteners, which provides better stability. (Women’s shoes tend to have narrower soles, and finding one with velcro is next to impossible.)

      Anyway, talk to an orthotist if you can, or perhaps a physio, and see what they would recommend.


    • Anonymous
      February 10, 2007 at 7:59 pm

      HI LIZ,well I got my cherriBaby again. And had trouble training this time and still not sure how well this will work. I had the AFO’sthey go almost to my knees and are plastic. I can’t walk a little bit without them like around house but if I doing serious walking I always put on my AFO’s. I have shoes that are like nursing shoes and I also apparent look like Childs dress shoes. You know the ones that are cute with single strap over only mind are not so cute. I also have a pair of canvas shoes with a Velcro strap that work just as well. I can’t wait tell our case settles and I can go to a regular therapist. Sometimes I walk around house so much that the next day I can’t hardly moved.

      I would like the kind that Deb talk about.

      good luck with your rehab,Liz. let us know how it goes.


    • Anonymous
      February 10, 2007 at 8:53 pm

      [QUOTE=codystanley]Hi Family,

      How difficult is it to adjust to wearing AFO’s and what should I look for in a good fit? If they hurt me, should I just have them adjusted or ask for another kind? Is there one kind that is more comfortable for a good fit? I have a big problem finding shoes/boots, need xx wides and velcro, but I am starting to get my hands to lace up. Any recommendation for a good shoe/boot that will fit over AFO’s.

      I’m a newbie to AFO’s, now I need advice.[/QUOTE]

      When I got mine, they made a mold of the foot and then use it to make the plastic AFO’s that come almost to the top of my calf. They have had to “adjust” them several time because of rubbing. I also have problems with shoes [size 15] Newbalance has a selection of wide and extra wide. There are also other on-line sites that may have what you need.

      As far as getting use to them, I think it took about 5 to 10 minutes.

      Good luck

    • February 10, 2007 at 9:14 pm

      I begin PT and OT on Monday and I am so excited.

      I had AFOs (the pre-fab generic kind) when I did PT last time. The PT used a heating gun to soften and mold them more to the shape of my feet. These greatly improved my gait. Eventually, I had custom ones made by a company known as Hanger. These AFOs were stiffer and weren’t as comfortable to use even with several fittings. Luckily, I had improved enough that I didn’t need them except for long walking periods (such as grocery shopping).

      AS for wearing them, I couldn’t initially feel my feet and since I was wearing my old size shoe found myself with ingrown toenails and severely cramped feet.

      Once my feet sensations came back, I could tell they were too small. I now wear my AFOs with a larger size shoe. I also take out their insoles and have replaced them with some wonderful ones I found online at Footsmart. New Balance makes a shoe with a roll-bar in the sole which is great for support.

      As for getting used to them, the pre-fab ones felt great once they were molded and I inserted the insole. The custom ones are great but I feel the hard plastic even thru the insole. The biggest discomfort is the band that straps around the calf.

      Good Luck with PT – perhaps we can compare notes! See you at the Boston Marathon;)

    • Anonymous
      February 11, 2007 at 12:02 am

      I’ve been doing a google search on AFO’S and one called a SAFO (silicone ankle foot orthosis) looks like it might work for me, it kinda looks like an ankle boot with an open toe and heel.

      Also, one called a Sassal Pacer that pulls the toes up and braces from the front, looks comfortable and like it might work.

      When I go to PT on Tue., I’m going to bring the info on AFO’S.

      Pretty soon I’ll be the expert to come to for advice on them

      As soon as I can stand on my legs and move without holding onto the walker, I’ll think about the Boston Marathon.

    • February 11, 2007 at 7:08 am

      I was using the molded plastic AFOs for about three years and dealt with the problems of finding shoes to wear with them, the discomfort, etc. In August I had to be refitted because of weight lose, luckily I was fitted with a new light weight AFO that I’m extremely happy with. They’re called ToeOFF, made by allard. The web site is [url][/url]. They fit into a wider selection of shoes, are easier on the feet ** I can spend more in them than the old plastic ones} and don’t have to be refitted with the weight lose-gain that goes along with steriod use. Do I sound like a commerial? lol. I’m really happy with them and my neuro is referring alot of people with the foot drop to be fitted with them. I’ve been in braces for 4 years now and like these the best. Good luck, think how nice it will be to walk around without the fear of crash and burn!

    • Anonymous
      February 14, 2007 at 1:08 pm

      I’m so glad you answered this post.
      Nate has size 15 and 16 feet also and whenever our insurance gives the ok to cast his foot and ankle, they will be making him an AFO with ankle hinge.
      He has a really bad deformity that happened while he was paralyzed. It caused his foot to turn under, toe in and his toes dropped too. The brace will hopefully help him be able to stand and walk easier.
      He has lots of shoes to pick from but if none work, I will need to know what store you got yours from.
      I’ll be PM’ing or e-mailing you.

    • February 14, 2007 at 5:51 pm

      [QUOTE]they will be making him an AFO with ankle hinge.[/QUOTE]

      Does he have foot drop? The reason I ask is that my first AFO had hinges and I tripped and fell all day long the first (and only) day I wore them. I did not have the strength to pull the foot and AFO up and the AFO remained in a position greater than the 90 degrees.
      I later had a custom one made that did not have the hinge and was molded in a right angle position. This was much easier to walk in!

    • Anonymous
      February 16, 2007 at 12:08 am


      I am so sorry !! I thought you already had AFO’s and used then before. When I made my post the other day, I thought you had been down that road already. My mistake, I apologize. Mary (badmommy) will be able to give you expert advice, as well asothers, I am sure.

      Send me a PM about your treatment with the new neuro. IVIG or not? Meds?

      Take care

    • Anonymous
      February 16, 2007 at 11:45 am

      Hello again,
      A little more about AFO’S for me. I’m not sure if I really need them because “I” (not the doctor) think I do okay with my ankle high LL BEAN trekking boots. I only stumble “a little bit” when I put other shoes or boots on. I am willing to try AFO’S though because indications are that I might have a second syndrome called CMT (Charcot Marie Tooth) and AFO’S are usually needed to correct that. I do fit the pattern of CMT, but the puzzle that doesn’t fit is that CMT is inheirted and if that means ONLY CMT, no-one in the family, close or distant, had CMT. I’m waiting for the results of a blood test.

      So, since I’ve never worn AFO’S before, I will wear them to see if I walk better. This is what I’m afraid of, when I stand on bare feet or just with socks on them, it feels like I have rocks under the skin and I just cannot tolerate standing on them. Since the AFO is under the foot and pressed into the skin does it feel different then the way the inside of your shoes and boots feel. Since I’m comfortable with my LL BEAN’S, can I try wearing boot casts instead of AFO’S, will they correct drop feet.

      The PT clinic is supposed to have someone come in to fit me for AFO’S, but if I can’t wear what they give me, I have a wonderful podiatrist that I really feel comfortable with (he told me I could call him Mike, rather then doctor) and he’d work with me to get a better fit that I won’t take off.

      Natesmom, I got your email and Dick S., I’ll email or PM from forum. It would be helpful to chat.

    • Anonymous
      February 16, 2007 at 1:01 pm

      I have some custom afos that cost about $2000. I had them made in 2005 and my legs have gotten fatter so I have had to modify them with a candle since they are plastic(I dont own a heat gun). One problem I had is I signed a bill and paid more than they said it would cost the first time ,$85 when they said $75 when I was fitted. Then they mailed me a bill for $200 wth? My insurance paid for most of it then they tried to rob me.

      I also bought some plastic lightweight afo’s [url][/url]

      these fit any shoes I already have. My huge custom afo’s only fit in a pair of size 13 shoes I have. No other shoes will fit them right. Wide or not they are not made to fit inside shoes regardless of what the makers say. I could never fit the custom AFOs in any shoes besides wide low top basketball shoes.

      The swedish ones give me some stability- I dont worry about falling because I trip over my toes but they dont help me stand like the custom ones do. I could probably play football or kick someone’s ribcage out while wearing the custom AFOs 🙂 but the other ones, not so much.

      My preference is to buy a nice cane and wear the $50 cheapo afos. That way I dont have to wear clown shoes.

      this looks like something that would help my footdrop and fit easily in a shoe

      I cant find any place locally to buy a cane besides walmart 🙁

    • February 16, 2007 at 11:40 pm

      I’m loving my new PT and OT. I will be getting fitted for some new, more flexible AFOs here in the next few weeks:D I am hoping they help with my gait because my gait now consists of me picking my foot up in what they call a ‘step gait’. The doc and PT said this is causing me to fatigue so quickly because it requires so much more work.

      Although I found out the new AFOs will come in boring colors such as white or nude:( I really liked the purple color that my other ones were!

    • Anonymous
      February 17, 2007 at 9:47 am

      Hi, Liz.

      CMT, although hereditary, doesn’t always (or even often) show up in other family members although they may carry the damaged gene–a great relief to those who have it. In my case, my father and I both have very high arches, so my neuro tested for CMT. After a genetics study (blood tests, etc.), it was determined that I had only a 30% likelihood of having it. I was finally diagnosed with CIDP when I had IVIg and it helped; CMT doesn’t respond to IVIg.

      I’ve tried various hiking boots for ankle support, and although they give the support I need, they tend to add too much extra weight, so even though my ankles are more stable it’s harder to get my feet off the floor! The light cloth AFOs I wear take care of that and allow me to wear very light-weight shoes. But not being able to feel my feet, I can’t advise about pressure on the bottoms of your feet–there are advantages to having totally numb feet!


    • Anonymous
      March 11, 2007 at 9:00 pm

      codystanley- Did you ever call to England or Canada about the SAFOs? I was going to try to make my own out of neoprene and part of some cheap plastic afo’s before seeing them.
      I was gonna see if I could get my local orthotics guy to measure and send away for them and get my insurance to pay or possibly go to England and get some myself.

      Do you have a link for those Sasssal Pacer things? I got nothing on google.

      I really would like to be able to wear shorts again without braces on or being visible.
      Im going to look into that figure 8 thing too. When Im tired, like now from stomach flu, my cheap comfortable AFOs do not help me stand so I need some better support.

      Anyone here use a cane? Were you fitted for one? My neuro’s nurse told me to go to the apothecary but I dont know if she meant a special pharmacy since I generally never hear anyone use that term.

    • Anonymous
      March 11, 2007 at 10:13 pm

      I have not done anything about getting AFO’s because I am still waiting for the results of specialized bloodwork my new neurologist did to determine whether I have CMT as he suspected. I myself, don’t think I need AFO’s. I don’t drag my foot/feet and I don’t stumble or trip unless I put on new shoes I’m not used to. The only thing that might indicate a dropfoot for me is the fact that I have little or no forward movement in either foot, distal weakness. I think I do well enough with sturdy ankle boots. After the results of the bloodwork are confirmed (will know near end of March), I may decide to try AFO’s just to see if they would help my balance. After a thorough search, I prefer the type made by this place [url][/url] because they look more like boots. I don’t even remember how I found the other’s I posted about because I did so many searches on different search engines.

    • Anonymous
      March 12, 2007 at 7:10 am

      Hi Liz sorry to hijack your thread but I have a question a man came to my parents house yesterday wanting to by my Dad’s car. This man had an AFO. I always wondered if an AFO would help my Dad.

      Last year they told me that my Dad does not have drop foot. But I think he drags if foot to walk abit in Therapy. May ask my Dad if I can go to his next therapy session on Tuesday.
      My Mom told me he had a stroke because it’s to do with the brain she doesn’t believe it’s meant for a stroke victim.

      Your thread inspired me took for information on the internet and I found that stroke victim can use AFO’s depending on their walking problems.
      Do hospitals Physical Therapy Department have generic AFO’s for patients to try to see if it would help them before making custom size one?

      I think if he had something to stabilize his lower leg/ankle it would help as long as it didn’t weight to much.


    • Anonymous
      March 12, 2007 at 9:18 am

      Hi Sue,
      Threads are made to add onto if someone else has something to ask. If your dad is going to physical therapy/physiotherapy, a therapist should be able to tell whether he should use AFO’S. And a PT clinic should be able to fit him for them and order them. If your dad see’s a podiatrist (foot doctor) at all, a podiatrist can fit someone for AFO’S.

      If I decide to try AFO’S to see if they help my balance, I’d rather do a search and find the kind that that I think I’ll wear. I want to try to find AFO’S that have a footbed like a boot. I know that I would “NEVER” be able to tolerate plastic pressed up against the feet.

      I’ve just done searches with various search engines and I just put in things like AFO’S, or foot orthotics or foot braces.

    • Anonymous
      March 12, 2007 at 1:22 pm

      AFOs aren’t limited to people with neurolgical problems, anyone with foot drop (the inability to lift one’s foot up when walking), is a candidate. It sunds like your father could benefit from one if he seems to be dragging his foot. And yes, most rehab centers do have generic ones to try, so that you could see if it helps him. I know at Mayo they had them…

    • Anonymous
      March 12, 2007 at 8:31 pm

      Thanks Liz and Pam. The way you explain it Pam makes sense to me. They told me last year that a foot drop is when the front of your foot goes down first I think they said.
      But if he can’t raise his foot when walking it not strong enough it need support and last year he looked like he had a bull legged now I don’t see him walk. He is at home in his wheelchair.

      Maybe I will see if I can go to his physio appointment tomorrow at the hospital.