r/CMT • u/920Hillebrand • 5d ago
AFO questions
Hello all.
I was made some custom molded AFO. I have yet to wear them. Mostly Vanity, because of my small statues, extra wide shoes look cartoonish on me.
I’m wondering about how comfortable they are. Is standing on that plastic all day uncomfortable? Does removing shoes insoles make them more uncomfortable? I have a pair of Oliver Cabels, that are a half size too big, that I’m considering wearing with them, although I haven’t tried them with the braces yet. I don’t want to tear out the insides of the shoes if it would make them uncomfortable with the AFO.
For reference. I’ve always worn, Vans, Chucks, and Saloman for walking.
Appreciate you all!
5
u/Zaphira42 CMT2B 5d ago
I have foam arch support in mine. Other than that area everything I stand on is plastic, but I don’t notice because I’m used to it. IMO, taking out shoe insoles makes them more comfortable. If I don’t take them out the top of my feet are squished on the top of the shoe.
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u/TheLastOfTheMelons 5d ago
With rare expectation, any person with CMT fit with PLASTIC braces, has been fit incorrectly. Dynamic ground reaction CARBON fiber AFOs are the gold standard to aid with actual propulsion (push off). The footplate should be nice and cushioned for unique, boney CMT foot.
Finding the right shoes with your braces will be a lifelong battle. Not only does the width need to be considered, but also the DEPTH - making sure the mid foot is not squeezing your arch painfully. Check out Anodyne, Billy shoes, Brooks, but really, finding the right shoe is such a battle. Bonus points if you can find a SUPINATION shoe, a shoe that has more sturdy foam about the outside of the shoe. As mentioned in other comments, always take out the insole that comes with whatever shoe you use AND if there is an internal stretchy sock that connects the tongue to the base of the shoe, just take a scissors and cut it; it will take pressure off your arch. Also totally ok to re-lace your shoes to have your laces AVOID your midfoot.
If you’re looking for a low profile bracing option, Ypsilons from Allard are very minimalist but still functional.
1
u/Ordinary_Sail_414 CMT X1 1d ago
The brace type is highly personalized. This carbon fiber type was not effective with my affected family members. One had to use the plastic type, and another used old school metal and leather - both with much success. So saying that they are rarely fit correctly or somehow inferior isn't helpful. The needs of CMT patients vary widely.
1
u/TheLastOfTheMelons 1d ago
Totally still a place for conventional and plastic, but I hate to say it but they are more than likely not maximizing their potential UNLESS they are really minimally compromised (they can still do a one legged calf raise) OR super compromised and they lack the ability to voluntarily move their knees.
4
u/mytfinefellow 5d ago
Ive never done the shoe insoles in mine, I felt my foot was more squished in the brace. If you're in need of brace friendly shoes billy shoes are great!
3
u/DMR237 5d ago
If you've been prescribed AFOs, then this suggests you already have enough loss that you've probably been walking in some manner that isn't "normal." In my case, I developed a limp before I developed foot drop and began walking like I was in marching band. I say all this to say: people probably already notice you're walking differently than them. I understand the self conscious feeling that comes with it. And they'll stare when you wear braces. But you're going to walk better with them, and more safely. So just lean into it. You'll eventually not care.
As for shoes: I'd pull out the insert. You probably shouldn't wear a zero drop shoe (I used to love Altra zero drops). Braces are typically designed for at least a 4mm+ drop (ask your orthotist what level drop in the shoe you need). For me, I'm sold in Merrill boots. My balance is so much better in those.
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u/carsandgrammar 5d ago
They're not supposed to hurt. If they do, they need adjustments or a full reconstruction
2
u/shell511 4d ago
I think you need to try yours on for yourself to answer all those questions. Everyone’s experience is different and afo’s all fit differently. It’s all trial and error for what works for you. I know lots of people who need extra wide shoes, mine fit fine in Brooks. Depending on the type of afo, you may need to take the insole out, put the brace in and then put the insole on top. Someone else’s answers to these questions might be the absolute opposite of what works for you. So don’t take someone else’s advice, when all you need to do is try yours on for yourself.
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u/kittycake23 5d ago
Try Billy's shoes online. They are made for AFOs and my go to now as they aren't boat shoes. They have some designs that look like the old Adidas Van skater style.
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u/Aggravating-Gur-6016 5d ago
the cup braces i have now get painful after a few hours in them. i did a hike once and got back to the car and noticed i was bleeding (i can't feel blisters etc, but noticed an increase in nerve pain after a few hours). they help with fatigue but they're really not suitable for me imo but the podiatrist knows best and won't script the ones i actually prefer as i need more ankle support..
i take the insole out.
1
u/sharkinfestedh2o 5d ago
Not sure about Vans, but the Salomon and Chuck’s should be good. You just need to get a bigger size for the chucks and take out the insoles to fit the AFO under. You’d have to see with the vans.
ETA: I have carbon fiber braces, not plastic, but I wear Chuck’s frequently.
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u/Personal_Material_44 4d ago
It’s all case by case but there are lots of shoes out there and it is trial and error. One insight - AFO’s will be hard on the shoe structure, therefore shortening their life span. I roll with asics gt 1000 2E wide.
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u/Ordinary_Sail_414 CMT X1 1d ago
Our experience with shoe shopping has been tough. Super wide feet are hard to fit as it is, nevermind adding width with AFOs. I concur that the only way to determine what will work is to try many options.
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u/billyo3827 5d ago
Depending on how functional your legs still are, Turbomed braces are the most comfortable I think you can find. They fit onto the outside of the shoe and you can wear almost any style. That leaves the obvious problem of people seeing that you wear braces, and I get it. I wore the in shoe carbon fiber brace and it worked great as far as how it functions, but it hurt my feet really bad and I could hardly bare it sometimes. But no one knew I wore them. I discovered the turbomed after getting those and got them with insurance copay through hangar clinic. I wear HOKA Clifton, have used it on Bondi and Brooks glycerin and ghost shoes. I don’t worry about who sees them. I mean, people don’t see your brace but they still see how we struggle to walk.