My visit with the physiatrist and AFO update

    • Anonymous
      October 23, 2007 at 10:22 am

      Hello friends.

      I guess I didnt know that a physio med dr is the same as a physiatrist. I’ve seen posts about these drs before…I learn something all the time.

      I went Friday and am now waiting for an orthotic specialist to call me to get in for AFO’s. What I didnt like was that the dr said she would recommend the metal ones b/c the plastic could cause me pressure sores b/c I have no feeling from the knees down. I do have sporatic feeling….it’s not ALL numb.
      She also thought I’d start with one even tho the right foot is almost as bad as the left.
      I dont know. I’m thinking I’ll let the orthotic specialist help me and try to get the plastic…the metal just wont work. I’m also going to be in trouble b/c all of my pants are tapered…they arent going to fit underneath.

      I choked back alot of tears with that Dr. I am set up to try some physical therapy next with a new machine that works on balance. I cant stand on one leg without falling over and i cant walk one foot in front of the other.
      The dr said she didnt know if I’d regain strength and that I’m losing my hands also…in that they are weak.
      I know that. I KNOW that it’s getting harder to type…but, I’m not going to stop…I’m NOT going to give in to this crap.

      We went to the Nebraska football game over the weekend….and yeah, we’re having a bad season, but I’m a true fan…and had to be there. I used a cane and while I hate to admit…it helped. My hubby said we’ll get a purple one for me.

      I am going to a nuerosurgeon to see about my chiari 1 malformation…it’s not that bad I guess but I have a disc out at c5. I’m not doing surgery !

      I’m at work today…was home sick yesterday…fighting a cold and I”m so tired ! But, I’d better get busy.

      does anyone have the metal braces ? Would I be wrong to refuse them ?
      Also, for those that drive…do you have a handicap sticker and is that hard to get ?


    • Anonymous
      October 23, 2007 at 10:42 am

      Stacey, Go with your gut feelings on your afos, you are the one to wear them-no one else is. Personally, I would go for the ones that are more comfortable, easy to walk in, easy to wear, and easy to take off while you are tired. You can always buy new pants, or just let out the inner seam a smidge to fit over the afo. Canes are meant to be decorated-mine has halloween things on it, and xmas is waiting in the wings.:)
      Thats Great that you went to the game, cane and all. Take care of that cold, get plenty of rest and drink chicken broth. Getting a handicapped placard is really easy. Just ask your dr for a script and take it to the bmv and it only costs a couple $ . My placard is good until 2016. You might call the bmv in your city and ask exactly what is needed to get a placard, you could probably get your physio dr to write the script for you. My first one I had to have some paperwork filled out by my dr, they did that in the hospital and I was given a placard that was good for 1 yr, than my dr said the script was all that is needed now by law and the placard lasts for 10 yrs. But do call the bmv to get your states rules. Take Care!

    • Anonymous
      October 23, 2007 at 12:02 pm

      I have the molded plastic AFO on right foot, it was custom made. It runs from arch to almost knee. They guy who made it was a nut and it is purple with exploding gold stars on it, and I am an old Grandma. My left is just a narrow one from PT dept. I recently sent for a pair from amerimark and they are working pretty well. You can see on line just above name. I pretty much run around in my power chair and just walk a little. Good luck, you can always so no–I am slowly learning. Did you see th T O tees shirts. We are also Husker fans and I love the Twins in summer. Bye for now R

    • Anonymous
      October 23, 2007 at 3:08 pm

      stay strong–you know what will make you comfortable. hope you start feeling better soon. when do you start getting your next round of ivig? hope it goes well.

    • Anonymous
      October 23, 2007 at 6:38 pm

      Hi Stacey

      It is so hard emotionally to get a brace!!! I was kind of devasted, truth be told. I only have one, an SMO (just above the ankle) and the ortho put a pink wrap on it, which added some levity at the time and was switched to white later. I think you should get the one that you are most comfortable with. Where did this notion that metal is better than plastic come from — the new plastics are incredible! And plastic can be molded exactly to your feet and legs. GO with what is comfortable to you.

      As for taper jeans and pants, throw ’em away and get the new flared legs or boot cuts — nobody buys tapered legs any more — do you not watch Oprah? ๐Ÿ˜‰ Shoes will be your biggest problem.

    • Anonymous
      October 23, 2007 at 7:49 pm

      Hi Stacey, I was able to get the handicap placard really easily for my son, I just went on line to dmv and printed out the form and faxed it to his dr to sign, we did not have to pay for it as we get the one that we put on the rearview mirror so we can take it with us where ever we go.

      Wendy, Jeffs mom

    • Anonymous
      October 23, 2007 at 9:31 pm

      Hi Stacey,

      If you have pants that you just don’t want to part with, here’s an idea that might work:

      Take a pair to a seamstress and have her open the seam from the hem up and place an invisible zipper in them – so the legs flare open when you get dressed – then you can close them without any noticeable difference. I would suggest placing the zipper on the inside seam – it will be easier for you to reach. If you are satisfied with the results, it can help salvage your work clothes and save you the frustration of having to shop for a complete new wardrobe. OTOH, it’s a good excuse to shop til you drop! (oops, no pun intended)

      best wishes,

    • Anonymous
      October 24, 2007 at 2:42 am

      Hi, Stacey,
      I would to put my two cents in this discussion as well. I have molded plastic AFOs, made to fit me and they are really nice. I have not ever seen metal ones, but have some doubt they could fit as well. These were made by wrapping my lower legs with a plaster-like substance and tape so they fit the contours of my feet and legs exactly. This was used as a mold for the plastic. Mine have a hinge at the ankle so that I can get a little push off from the toes (to help efficiency of walking and make it less tiring), but also have a stopper to keep the toes from falling down so that I would trip (from the drop foot). It helped when I got these that, for me, they were for both legs so that I walk more the same on both sides. Even though I walk differently with the AFOs, I think it is less “stress” on back and less “limpy” than only one side. You say that both sides are affected close to the same. When I got my new AFOs, they were larger than the off the shelf AFO I had had, so I had to get a larger pair of shoes. I went to a “real” family shoe store that advertised helping people with foot problems and orthotics and bought SAS shoes that were a size bigger and wider than my usual shoe. They are very comfortable and have an insert that removes, so that you might be able to buy the same size as usual. They were more expensive there, but the people did know what shoes would best work with the AFOS and they are comfortable with the AFOs. I keep the AFOs in the shoes and put them on and off together. This is a LOT easier than trying to make the AFOs go into shoes (and probably safer than wearing loose shoes some of the time). I like soft shoe bottoms and also leave a extra foot cushion in the bottom–you would have to be a little careful if you do not have feeling in your feet, to make sure that there is no focal pressure. I think the cushion might make this better as long as it does not fold. I keep a regular pair of shoes at work for when I take the AFOs off.

      I think it is probably more important that the AFOs are made for you than what material they are made from because different people have different challenges to walking. A lot of people talked about a toe-off AFO. I do not know what this is, but they said this kind helped them a lot.

      By all means decorate, decorate, decorate. i learned this from the courageous kids I work with. I think of this as helping people to see beyond the cane/walker to see the personality that is walking here. I think Regina’s AFO sounds awesome! I just got a walker and was talking today to my physical therapist about this because in some ways it was a psychological hurdle, but she said she thought it might be a positive step because then I would try to do more than I can do with just a cane. this is good for body and spirit. I think the point is that we want to be living life to the fullest we can and I know I can do this a little better with a walker than a cane and I walk funny anyway, so no matter people are going to notice–so why not use the method that works the best and lose the pride issue.

      Speaking of pride, I really did not want a handicap placard and delayed getting one for months. When I got the application (downloaded from BMV site or picked up at BMV site), my physician filled it out for permanent disability and I got really upset and begged him to change this to temporary, which he did. He said he was just trying to make it simpler for me, which I appreciate, but I could not get past the word permanent. Anyway, the disability placard has helped to get back to doing a few more things in life. I use it some of the time and not other times, but it really helps if I want to go someplace and would have to walk far from a parking place and use all my energy and reserves just to get there. Before, I had limited my life down to almost no “fun acitivities” because I could not walk very far. Think of the BMV disability placard as your avenue to better support the Nebraska team or something else positive associated with living life fully.

      I have heard a lot of people call the physiatrist a physical medicine doctor or rehabilitation medicine doctor, I think because sometimes physiatrist is confused with psychiatrist as really recently happened on this forum.

      With Hope for Cure of these diseases.

    • Anonymous
      October 24, 2007 at 2:53 am


      Why would your doctor suggest metal AFO’s instead of the plastic? Don’t
      let them talk you into that…heck, if something should happen that you
      would trip, my gosh, I’d rather have plastic than metal.

      Plastic is used so that it can be molded “exactly” to your legs…metal can’t be
      that exact. Everyone that has AFO’s has numbness in their legs…the purpose
      is to keep the legs supportive and to keep the knees from hyperextending.

      You will hate metal ones…trust me. At that point you won’t wear them.
      Don’t forget, you need one size larger for shoes, when you get the AFO’s…if
      you wear a size 7 now, you’ll need a size 8 – or 7 1/2 and you’ll need 8 1/2.

      The plastic ones are a little flexible – metal isn’t. To check for pressure point
      spots – you look to see if there are any red spots on your legs or feet or toes.
      If so, they will either shave the plastic back a little or heat it up to re-mold
      a specific area…metal can’t be changed.

      My gosh – the next thing your doctor will ask for is a full body armour suit…
      that is silly…lol. :p

      Miami Girl ๐Ÿ™‚

    • October 24, 2007 at 10:36 am

      I’ve had both plastic and metal braces; the plastic were harder to find shoes that fit, uncomfortable and couldn’t handle my weight going up and down from the steriods. I’ve now some made by Toeoff, they are lighter weight, easier to find shoes for {though you’ll still have some problems}, and won’t have to be replaced each time my weight changes. They only have a bit of metal mostly like a fiberglass or such, also have thin padding that can be removed to wash or replace when they need. After three years of the molded plastic I was like a little kid when they gave me the new ones. I can spend more time on my feet without out the discomfort, have a better choice of shoes and it’s easier to get them in out of the shoes. When I showed the neuro the new braces he started suggesting them to all his patients.
      It’s depressing having to wear them but hey not so many trips and falls for me made me more than willing to wear then. I ‘ve even found some dress boots with no heel so I can dress up in the winter. With a longer skirt and the boots you really can’t see them. Am I vain or what!/! lol.

    • Anonymous
      October 25, 2007 at 12:24 am

      I am not sure what you mean by the metal braces; are they old-fashioned kind that people wore like 40 years ago? Or the “toe-off” kind mentioned above. I have the toe-offs, but cannot wear them as my feet hurt too much in them, even with the sole in between I feel like I am walking on cement. I have worn the fitted pastic AFOs for 3 years now & find them comfortable, but do wish I could try the new silicone ones made in England by Dorset company. But insurance doesn’t cover them & they are pricy!

      As for feeling, my son has worn the plastic AFOs for 25 years now to walk, as he was born with spina bifida. He has no feeling below the waist at all, & has never had a pressure sore from them. He has actually worn the same pair for the past 10 years now, from ages 16 to 26. Don’t let some doctor talk you into some out-dated clunky braces. BTW both my son & I have handicapped license plates, as we are both the principal drivers of our vehicles. It is much easier than putting the placard out each time we park. I also have a decorative cane, paisley that I still love after 3 years. There are many fancy ones out there now. I wouldn’t leave home without it, makes me feel safe.

    • Anonymous
      October 25, 2007 at 7:31 am

      My goodness, I dont even know where to start !

      The dr said metal ones and I didnt ask if they were the old fashioned, forrest gumpish kind. She only said that they stick out about an inch or so from the side of the leg. My visual, is Forrest Gump.
      I thought to myself that if I were getting a pressure sore , I would know it. I do see my legs, I do look at my body…hello ? But, I didnt say it. As Meadow said, it’s so hard emotionally to get a brace. I was swallowing tears and not asking many questions.

      The Ortho specialists have not called me yet and I was told to call them if I didnt hear from them by Wednesday. I got busy yesterday and didnt call. but, I’m going to do it today. Get the appt set up and find out what the deal is. Maybe I CAN get just the ankle kind and trust me, I do want plastic. I dont need any more attention drawn to myself than I already have.

      Decorate…sorry for not remembering who right now…but someone mentioned getting my son’s handprint on my AFO. Wouldnt that be just awesome.
      I would always have him close to me. That was a fantastic idea.

      You are all giving great advice and I really appreciate that. Here’s the thing tho…and, nope Meadow, I dont watch Oprah ! :p Not for a while anyway.
      My legs are short…I am 5’3 and my opinion is that the flared legs and boot cut just dont look so good on me…my legs are short. AND, to top it off…as Miami girl is advising…buying the bigger shoe….Oh dear…I already where a size 10 ! Yes, I am short with big feet. ha!:rolleyes:
      I’m in trouble.
      The zipper idea is cool…I’ll just see what I find out about the brace and go from there. I so tend to worry years in advance about everything !

      I do have signed paperwork in the mail to me from the dr for a handicap thing to take to the DMV …a temporary one for 6 mos. I am fine with that. Temporary does sound better .

      thanks everyone….You ARE the best. And, yes, I saw the T O shirts….I want one.

      best wishes,


    • October 30, 2007 at 5:49 pm

      If you don’t think you will wear the metal AFOs, then don’t bother with them. Because they will be like one of my first pairs of AFOs and sit in the closet (along side all the shoes I can’t wear).
      The plastic AFOs that I was given were custom. After wearing them for a day, it is quite noticeable where the sore spots were. I went in the next day and padding was added. I had more sore spots a week later and they used a heat gun to flair it out.
      These AFOs were great but I felt I could handle the super-flexible ones. My PT didn’t want me to since she said this illness was chronic and it would only get worse (my foot drop). I used them for a few months and now they sit in closet.
      I went online to ebay and found the Swiss super-flexible ones. Not wanting to pay an arm and a leg, I was lucky enough to find them on ebay for next to nothing! I have been using them since August with my favorite insoles and WEAR THEM EVERYDAY!:D

      One thing to remind whoever is writing the script is that CIDP affects the sensory nerves as well. I was warned against the metal ones by several PTs and docs because they are very cold in the winter and hot in the summer.

      And if it makes you feel better (I always try to find the positive!) flared pant legs are in style still, LOL! Perhaps treat yourself to a few new pairs of pants once you have your AFOs!
      Good Luck!!

    • Anonymous
      October 31, 2007 at 7:20 am

      My appt is tomorrow and I really dont want to go. My hubby told me he’d buy me new pants if that’s what it took…

      too much going on and I’m just not up to this….

      I will let you know.

      thanks guys,

    • October 31, 2007 at 7:25 am

      Too bad AFOs aren’t like a car that you can test drive before you buy. I bet each of us has at least one pair in the closet we can’t wear. I’d at least ask if there was any sort of selection before you’re fitted.

    • October 31, 2007 at 10:03 am

      Stacey, it’s going to be okay. I hate my AFOs but I hate not getting around, tripping, and being more tired (from trying to walk without them) even more.

      I have a total of 5 pairs of AFOs and each time I was slapped into them, I cried. Each morning, I still dread having to put them on – I feel claustophobic in them. But then when the kids ask if we can go outside (uneven ground) or talk a walk on the prairie path, I am glad that I have the means to do it.

      Hang in there and take the hubby up on the offer of new pants. Being a stay-at-home mom, I normally wear a lot of ‘active wear’ which luckily are either straight leg or wide near the foot. The super-flexible Swiss ones are so small compared with some of my first AFOs that they even fit with my slim cut jeans. You do have options!!

      Let us know what you end up with!! And make sure you let them know that you are the one that has to wear these. I too have little sensory feeling left but I do just fine with the plastic. Like I said, you can see wear the sore points are and a good orthotist can fix that problem.

    • October 31, 2007 at 3:32 pm

      Oops, the AFOs I use are [B]Swedish AFO [/B]not Swiss. If anyone is interested in the learning more about them, please contact me and I can put you in touch with the owner. Each one only cost $24.10 plus a minimul amount of shipping so even if they hadn’t worked, I still wouldn’t have been out much.

    • Anonymous
      October 31, 2007 at 8:06 pm

      I have the custom molded plastic AFO’s and I would not use anything else because if you do notice a problem they are easily fixed by heating it up and adjusting the molded area. They had to do that with my right one. They can be hinged which my right one is set up for but since I am not walking yet they left it solid. I wear them to try to keep my feet from dropping and turning in kind of like training them. I wear mine on the outside of my clothes. Basically because I don’t care what people think besides think about this if you were stumbling before people would think “what is wrong with you?” if they saw the AFO’s they would not even question youhad a physical problem and it wouldn’t even phase them if you tripped. Before my AFO’s were finished people would make comments about me being in the wheelchair now having my AFO’s on almost all day they don’t even take a second look. Oh wel anyway you should definitely go with what you think will work for you not what the doctor thinks because they are not the one who has to wear them and have no idea of what we go through. Do for you.

    • Anonymous
      November 2, 2007 at 10:41 am

      :rolleyes: I actually went to the appt and didnt cancel…I am really proud of myself for that !

      The orthist or whatever he is called…the guy that will make it- was absolutely wonderful. First I found out that the place was out of network for my insurance but he told me that he would try to work it out so I wouldnt have any out of pocket…if he couldnt, he said he really didnt want me to go anywhere else but that he’d look at my list of providers and recommend.

      He was so kind and caring. He said he personally talked to my dr and went over my chart with her. He said he didnt want me in metal braces and said he understood that I would want to be as incognito with them as possible. He said he understood how I must feel at my age to have to go thru this, etc.
      I realllllllllly felt comfortable with him and would recommend him to anyone.
      And, he was easy on the eyes..:p And, he even knew what CIDP was ! Knew alot about demyelination…I was impressed. We all know how unusual it is to find someone that knows anything about this crap.

      He casted my leg and then showed me a sample that they had there…it will be a solid one with no hinges…he said I’ll need one for the other leg eventually. I already knew that part.

      It will be a few weeks before I get it…I have time to get myself ready.

      My fingers are stiff so I’m not going to go on and on….I’ll let you know how things go.

      thank you alll…..have a great weekend !


    • Anonymous
      November 2, 2007 at 11:48 am


      I am SO proud of you going to the orthodic appointment. AND YOU were
      well received by him…CONGRATULATIONS!!!

      I’m pleased that you liked him…easy on the eyes, huh? Mine was too, but
      he was happily married – it didn’t stop the hospital physical therapists from
      drooling over him…hehehe. It is nice to know that someone can be so
      knowledgeable about CIDP…they know so much because they fit for every-
      one, from amputees to body casts…that’s why I recommend that anyone
      that needs AFO’s to be fitted for them, professionally, by an orthodic
      qualified person. I cannot see anyone buying them over the internet…they
      must be fitted to your legs inorder to help YOU walk.

      It just goes to show you, that he’s more interested in helping you walk, than
      getting paid…that’s a caring professional.

      YOU DID FINE…HOORAY FOR STACEY…now you won’t trip…YEAH!!!!!!!!!!!!!!
      You’ll be so pleased how well your balance will be.

      Miami Girl

    • Anonymous
      November 2, 2007 at 11:58 am

      I am sooooo happy you went! Good for you. The important thing about this experience besides the obvious, (AFO’s) is getting that kind of treatment and validation. I had the same experience and felt so much better after the ortho compassionately explained that it was all about safety and comfort. At first I thought it was kind of ridiculous to get braces when I am only 40 and can still walk. But as he pointed out, this is progressive (in my case) and it is better to be safe and conserve energy. Even though I don’t use them daily, it is nice to have them for those days when I just cant do it alone or I want to go to the park with my dog. You will be amazed to at how once you get used to them it is so much easier to walk and you feel more confident. I am really proud of you. Stay in touch.

    • Anonymous
      November 2, 2007 at 2:41 pm

      I got CIDP at age 48 & severe foot drop with it. I didn’t want to have to wear the plastic AFOs (still don’t), but it’s either that or stay in a wheelchair. I gave away all of my tennis shoes, dress shoes, etc. to my home health care nurse when we moved; that was a hard thing to do. I miss wearing sandals in the summer, but I do swim with water shoes over my braces. I guess for me it’s all about quality of life, & the AFOs do give me that. The second pair I got (lost a lot of the weight I had gained on steroids), I ordered in flesh color. In the summer I buy flesh colored socks to go under them & you can hardly notice them when I wear shorts.

    • Anonymous
      November 2, 2007 at 6:41 pm

      Good for you Stacey — you knew it had to be done and its almost always better not to procrastinate. The first week or two with AFOs will be strange but then you will just forget you have them on — until you DON’T have them on, and then you will feel unprotected and vulnerable.

    • Anonymous
      November 5, 2007 at 12:14 pm

      Good luck! I have 3 pair of AFO’s. I had some custom made in 2005 and the orthotics place tried to rip me off by sending me additional bills after I paid already. Those were big black and plastic. It used to hurt me so much to put them on and put shoes on them that I’d need about 30-50 minutes and I’d be a sweatty mess afterward. They also hurt like hell. So I then bought the swedish AFOs someone else mentioned – theyre pretty good. No real support above the ankle but you can wear your normal shoe size and it stops the foot drop.
      I found out last year about these silicone afos they make in England- insurance wont pay for them and they cost about $4000. Couldnt get those but they were nice and lowprofile – you could wear them under socks and wear shorts without showing that you’re wearing braces.
      I just found some new AFOs that are like the ones I was going to design for myself – they’re neoprene and velcro. They work good but leave my ankles swollen if I dont wrap my foot up the right way. But I can wear shorts with them!

      Now I’ve torn one of the swedish afos but not all the way through in the part near the achilles tendon- so they work but are cheap. They last 2 years and I paid $70 for both so its a good deal. I pretty much wear my big custom AFOs all the time now. I can even run with them on.I ended up having to use a candle and reshape the ankles. I wear size 14 W shoes with them and it takes me 2 minutes to put both of them on. I also got a solid metal shoe horn which helps out great.
      I bought shoes at Walmart to test out wearing my clunky AFOs with and now I regret not buying more pairs of the shoes I got. You cant wear just any shoes with em and if the shoe has less lace holes and is able to open wide it helps a lot. I used to get my shoes on with pliers to pull up the back of the shoe but that will ruin your shoes ๐Ÿ˜† A good solid metal shoe horn is great. I found some great nike running shoes that I dont even need a shoe horn for. I’m really self-conscious about wearing braces even in front of my wife so it feels good to not be a blatant cripple when I go out. I think I still need a cane though to help me stand in place like if I have to wait in lines.

    • Anonymous
      November 6, 2007 at 7:39 am


      sounds like you’ve had your share of bad AFO’s. YIKES.

    • Anonymous
      November 20, 2007 at 10:03 pm


      sounds like you’ve had your share of bad AFO’s. YIKES.[/QUOTE]
      Ive had my share of bad feet too ๐Ÿ˜‰

      You should see me duct taping little rubber spacers onto my afos every week or so, just so you can’t hear me clicking along when I walk. The pressure is so much the rubber disintegrates and 7 pieces of duct tape get sliced through.

      It beats feeling weak and waiting to trip or twist my ankle.