Ankle-Foot Orthoses (AFOs): Your experience?

Hi Ray, nice to “meet” you.
I checked out your profile and see you have an axonal polyneuropathy diagnosis. Is this what is causing your problems? I do not know anything about it so not quite sure if I am of any help. I do however, sleep in boots that keep my ankles in their neutral, 90 degree angle position at night. My PT recommended them several years ago. I couldn’t wear them more than maybe one hour the first night I had them, I remember it was horrible. I have been super consistent with wearing them and PT exercises since. I won’t give them up because I know they help my entire body function better (including my balance). They go everywhere with me now.

Are you thinking daytime support, or maybe your PT thinks something like sleeping position may help? It’s crazy what our bodies decides will help.

Hi, Janelle (@jlharsh)

Thanks for getting back to me! My Connect bio may simply say "axonal polyneuropathy;" however in the years I made that bio, my diagnosis has grown more specific: idiopathic large-fiber, sensory predominant, polyneuropathy. I'm lucky in that I have no pain. My one and only symptom is poor balance––balance that could be worse, far worse.

The reason I posted my question about AFOs is others on Connect whom I've gotten to know over the years and whose one symptom is a match for mine have mentioned AFOs. A few of those I've spoken to tell that AFOs might be worth looking into if I notice my balance getting worse.

Frankly, I'm not sure it's getting worse; I have good days and less good days, good times of day and less good times of day. IN any event, I thought I'd arm myself with some understanding of what AFOs are and if others have had success in wearing them. Up until now, no one (to include my PT) is advising I get AFOs.

I use a cane, but not everywhere: in familiar settings, I'm fine going about without my cane Should it be determined that my balance is getting worse, then I'll phone my orthopedist and ask if his office is able to outfit me with AFOs.

Again, Janelle, thanks for your reply!

Cheers!
Ray (@ray666)

Hi Ray--I'm in the process of getting a Richie brace--a device that's designed to help my right foot stay up a second or two longer than it normally does these days. The idea is to avoid falls caused by foot drop. I also hope it will even out my gait, allowing me to walk straighter than I can now.
My balance has been bad for two or three years. I've managed to avoid falls in the last year by walking less. I still am part of an improv comedy group and I have serious concerns about hopping on and off stage, not to mention playing anything but a nasty old man or a punch-drunk fighter.

My podiatrist recommended the brace a year or so ago. I just went to the orthosis specialist in mid-April. I'll let you know more with each step, so to speak. I'm looking forward to walking with more assurance, even if I still have to use walking sticks! Hang in there....

Thank you for your kind response, Ray. I learned something new today!

I have one prescribed by my neurologist primarily for foot drop. I haven't used it in maybe a year and get along ok for the most part. You will want to wear it all of the time which means inside and outside.You will need a pair of slippers with one slightly larger than the other. It's possible you may need to buy 2 pairs of slightly differing size. I usually have odor eaters in both shoes and slippers so the OE with the AFO goes between your foot and the AFO. Same thing with the shoes.

I've been have lower back muscular pain issues. I walk with a noticeable hitch. Never used to. I'm thinking the lower back issues could be partly due to how I walk so I'm thinking of using the AFO again. Just need to round up the right shoes and slippers. I also have a corn on my foot drop foot that came back a couple weeks after I started recovering from L1 - L5 laminectomy surgery [Lumbar 1-Lumbar 5 Posterior Spinal Fusion with instrumentation and Lumbar 4-Lumbar 5 Transforaminal lumbar interbody fusion]. It had been gone for years before that.
I also suffer from balance problems, but am loath to attribute that from foot drop.

Good morning, chawk (@chawk)

Thank you for your reply. I'd never heard of a Richie brace. A good deal of my puzzlement is because I don't have foot drop, at least nothing so impairing that my PT has ever suggested foot drop. And I know what foot drop is like. I had a bout with foot drop about 20 years ago. It was attributed to pinched nerve in my lower spine. I wore a Velcro strap on my foot for … for, as I recall, only a few weeks before my foot was functioning normally again. Today's balance issues have all to do with weak legs, the result of almost a year in sepsis recovery.

Improv comedy, eh? You might know from other posts I've left on Connect that I made my living on stage until first my neuropathy and then a septic infection wreaked such havoc with my balance I had little choice but to go into semi-retirement. I call it "semi-" in hopes that I may one day be able to perform again, but I've become accepting enough of my neuropathy's incurability to live my life in other ways. You mention being limited to playing nothing but "nasty old men" or "punch-drunk fighters." I know how you feel. I keep hoping one of these some director will call and ask if I'd like to play Captain Ahab. I might be able to manage a whale-bone leg if only the sea doesn't get too rough. 🙂

Cheers!
Ray (@ray666)

@ray666 Ray - I have idiopathic axonal sensory motor PN and in 2020, Mayo stated I have both large and small fiber. I started with bilateral drop foot around spring of 2019. I tripped and fell flat on my face more than once and in 2020 was fitted with AFO's. In 2020 my balance was still somewhat OK yet slightly challenging at times like on uneven surfaces. At the time, I was in PT and at the request of my physical therapist, my primary doctor issued a prescription for my AFO's which meant they were covered by insurance. The main purpose of the AFO's was for my drop foot, however, as an added benefit they also provide me with much improved balance.

Hi, Ray.... After reading of Ed's experience with AFOs last year, I found a pair of polycarbon ones on Ebay. I also ordered some made of polystyrene on Amazon. The polystyrene ones are lighter. The two types feel a bit different when I wear them. The polycarbon ones have a slight 'spring' to them when I walk, whereas the polystyrene are just a flat surface. I do find that either pair helps my balance a bit, but I usually don't wear them around the house, but moreso when I'm going out for something. The ones I got from Amazon were only about $40 each.... and can be returned if you don't like them. So that would give you a chance to "give them a try." The polycarbon ones usually have to be purchased through an ortho supplier and they run around $700 to $1000 each, but I did find some being resold on Ebay, the right size, and they fit my feet well. I think I paid $100 each for those. I DO notice better balance when I'm wearing them. Not perfect.... but improved compared without. If I'm going to be doing a lot of walking, I usually take my cane, as well. Lately, I've noticed that my calf muscles seem weaker.... and my legs seem to tire out more easily. I'm not sure if that's progression of the neuropathy, or if it's from lack of use of the leg muscles. What works for one my not work for another, as you know.... but the ones on Amazon would at least give you a chance to try them and see if they make any difference without too much expense.... and they could be returned! Best wishes! Mike

Good morning, Ed (@njed)

My PN may also be a combo of large and small fiber, but up until now, all I've been able to get folks in my neurologist's office to confirm is large fiber. My original diagnosis was in August 2022. To date, my chief complaint is lousy balance. I don't believe drop foot is a contributor. I've been on alert for drop foot because I had a short-lived episode of drop foot about 10 or 15 years ago. I can still remember the onset: I was walking down the street, returning to my car, when suddenly my right foot began slip-sliding. Huh? It continued all that day, so the next day I consulted my PCP, and she sent me to a "shop" in the hospital basement where a technician fitted me with a Velcro brace. Was that brace an "official" AFO? I don't know. My foot drop cleared up after only a few short weeks, and it has not bothered me since. I blame today's trouble with balance entirely on my PN (and for me, too, uneven surfaces are especially challenging). Whether or not my PN is altogether to blame (I may also have a little stealth drop foot, who knows?), Over the past almost three years of wandering the Connect campus, I've gleaned that AFOs may help with more than just drop foot. Your message this morning only adds evidence that they do (or, at least, may do). I've an appointment this afternoon with my podiatrist. I plan to ask him about AFOs. He may direct me to my orthopedist's office, in which case I'll phone that office when I return home. If something out there can give me more stability––even a little more––I'm all for it!

Thanks, Ed!
Ray (@ray666)

" … I've noticed that my calf muscles seem weaker.... and my legs seem to tire out more easily … "

Hi, Mike - That's exactly the reason I started my inquiry about AFOs. I can't be sure if it's a sign of progression, or if lately I've just been asking more of my legs. My partner and I are still in the midst of our big move; consequently, I'm carrying more things, loading and unloading my Jeep a half dozen times a day, and more: all stuff that would be wearying my legs even if I didn't have PN. The next step: talk to my podiatrist (in two hours) and get his input. Even if he's not keen on AFOs, I'll still continue ask around. I'd love to try a pair, whether thay are a big help or not, just to know.

Take care, Mike. Stay well!
Ray (@ray666)