WARNING: Three Things You Need to Know About Your AFO (Ankle/Foot Orthotic), aka People Fuck Up

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A long time ago, in a land far, far away (I’m kidding–it was New Jersey), a man, called an orthotist, came to Absecon Manor, a nursing home where I was a patient, and huddled with the physical therapists with no input from me. I wanted to know about the options for materials for the brace, the cost, the right to come back for fittings. But they huddled without me. 

He fitted me for a brace, wrapping plaster on  my socked leg that acted as the mold. He produced what is known universally as an AFO (pictured right).

I hated the AFO. It was cumbersome, and the man told me, in no uncertain and threatening terms, that I could go nowhere without it. I had to wear a high sock, even in the blazing heat of summer, to cover the plastic of the brace which would irritate my skin if it got stuck to it. At night, I’d take it off, where many times the AFO would go with me for an urgent bathroom trip. 

Brace on when I awoke, brace off when I wanted to read stretched out on the sofa, brace on when I wanted a drink from the kitchen, brace off when I wanted to take an hour nap, brace on when I wanted lunch, brace off when I wanted to do my sitting-down exercises, brace on when it was night to close the blinds, brace off…. You do have the pattern, don’t you?

Medicare will pay for an AFO every 5 years, and I had the brace for 6 years, so when I moved to Pennsylvania, I found out the AFO was made incorrectly. But I’m getting ahead of myself. Here’s my story: 

There are 3 places where I could have the brace made in Pittsburgh. I went to the first, but the orthotist contradicted himself twice. So I lost confidence in him for what I thought was unadulterated bullshit. 

I went to the second place, but the orthotist didn’t remember that she took pictures of the old brace twice to remind herself where the strap had to go, she didn’t remember an appointment I made with her, and she said there would be a charge when there wasn’t any. The same deal. No confidence. 

There was only one place left. I met the orthotist–I’ll call him Bill–and he didn’t like all the questions I asked, and he would rather that I be stupid, just barely tolerating the questions. And I just barely saved the best place for last.

Bill socked my foot and put the plaster over to create a mold. I came back in a week to receive the finished AFO.

“It hurts in my ankle and there’s pain around the calf,” I said.

“Try it and call us back if there’s any problems,” Bill replied.

“Um, I already told you. There’s pain in my ankle and calf.”

So he adjusted my AFO with some kind of melting-plastic thing and tried it again.

“That’s all I can do,” Bill said, preferring the people who went in there were uncomplaining and settled on whatever they dished out. 

I left because I had 90 days to complain. I read the fine print.

I called the next morning to request another appointment, and the receptionist said there was nothing available until next week. 

“Look again. My old brace has fractures, and it’s only a matter of time when I will be bedridden without the brace,” I whined. The old brace did have fractures, but bedridden? I may have exaggerated a teensy bit, but as my father once said, “The squeaky wheel gets the oil.” So the receptionist found a spot that afternoon.

But this time, the manager–I’ll refer to him as Dave who is an orthotist as well–was there, filled with so much more knowledge than Bill and offering to recast my leg for yet another brace.

I have been there 4 times so far and here’s what Dave said, 3 things about the AFO that I think you should know:

1. The AFO must come 1″ to 1-1/2″ below the head of the fibula. You probably won’t know what I’m talking about, but the orthotist will. Dave said the 6-year-old brace was too tall and Bill’s brace was too short. Maybe that’s why Bill’s brace caused me pain, impinging on a nerve. I was impressed with Dave’s honesty. He had my interests, instead of the company’s, at heart. 

2. Dave also told me that the best material for the AFO is co-polymer, rather than the polypropylene which is a generic name for thousands of compounds used by thousands of vendors. The co-polymer is more rigid and 1/16 of an inch thicker, but it isn’t subject to the fractures around the joints–the places where nut and screws go on the AFO–like the polypropylene.

3. The AFO, like the original, 6-year-old one, was free of charge. That news only cheered me up because I needed it. It wasn’t a “hurrah” moment and I already knew that Medicare covers the AFO every 5 years.

But there was a chink in the armor, if you will. I’m going back, one more time–at least. My physical therapist saw my new brace and told me to tell Dave that my foot is externally rotated. The brace is supposed to re-mediate that problem, she said. Dave told me that my foot is internally rotated, coming from my hip. There’s nothing more he could do.

So they’re going to have a conversation in a few days–two experts who both know what they’re talking about. Hoo-boy. I’d love to be a fly on the wall for that exchange. I’ll let you know in a future post who won. 

Bottom line: I have to wear this brace 18 hours a day and it can’t be a C+ situation. The AFO needs an A+. I won’t settle for anything less. You shouldn’t either. 

Joyce Hoffman

Joyce Hoffman

Joyce Hoffman is one of the world's top 10 stroke bloggers according to the Medical News Today. You can find the original post and other blogs Joyce wrote in Tales of a Stroke Survivor. (https://talesofastrokesurvivor.blog)
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Joyce Hoffman
5 years ago

I love hearing from my readers! Best wishes to you and your husband!

8 years ago

Hi Joyce,
I just recently found your awesome blog while researching personal experiences with strokes.
My hubby (age 52) had a cerebellar stroke on January 29, 2015. He also has MS and Addisons disease. Six days prior to the stroke, he'd had surgery to remove hardware from his right leg that had been put in almost a year prior to stabilize the broken bone. He fell at work, broke his femur (1st fall ever, guess may as well go all out, eh?!)

Even though my career is in OT, it's a whole "different ball o'wax"
When it's yourself or a loved one who's going through stuff.

I just wanted to say I hate you had a stroke, but I love you've done positive things as a result of it…like sharing your experiences on this blog and in your book (which I just purchased the Kindle edition, could hardly put it down to leave a comment…lol

I've worked in various therapeutic settings, and your writing style made feel like I was physically there, too. And what you write is for the most part "spot on".

I'll hush now, don't want to scare you with my 1st comment 😉

Thanks again, my hubby and I are sending good thoughts and prayers your way.

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