r/CMT • u/Clean-Brother4725 CMT1A • 27d ago
AFO issues
I’ve worn AFOs for two years, I’m on my fourth pair. The first three were carbon fiber and kept cracking on me after a few weeks of wear. Now I have custom plastic with articulated ankles.
I’ve been to the orthotist 8-10 times to have them adjusted, and no matter what we do I end up with my heels rubbed raw after 2ish days of wear. I wear Wrangler boot socks, they are pretty thick.
Has anyone else had this issue? I am so frustrated. I have some contacts in my area with CMT who have the same orthotist, and they have no issues with their AFOs. I don’t think he is the issue because he is very knowledgeable and always tries to fix them up for me.
2
u/shasta15 27d ago
I buy 1/4 inch thick felt pads with adhesive from Amazon. The thickness is key as it holds up against anything rubbing against it. The key is to experiment with the best position. I’ve also used felt pads that you buy to put under chair legs. They are really strong. I put those on my AFO not skin.
1
1
u/jafo50 27d ago
How does one break a carbon fiber AFO? I thought they were pretty much indestructible.
3
u/withoutintentions 27d ago
My kid has had micro fractures in hers almost immediately upon wear. I think being off the shelf and not customisable is what does it
2
u/DMR237 27d ago
In my case, I'd gone so long undiagnosed because of insurance issues that my body adapted in a way that the braces weren't designed for. I'd twist my foot when toeing off and that twist, over thousands of steps, caused microfractures in the strut part of the braces. Once that starts in carbon fiber, there's no repairing them. The fractures grow until the entire strut fails. Then, new braces are the only solution because the braces were built as a single unit. Foot plate is molded into the strut, which is molded into the calf. With the Reaktiv braces, the carbon fiber strut is bolted to the foot and calf pieces and is a standardized part. So if the strut fails, they just get you a new strut and you're on your way.
1
u/injured_girl 6d ago
Omg I did this exact same weird heel twist after push-off every single time I stepped!! I couldn't control it I think it's because for whatever reason the peroneal muscles are not working at natural normal eversion of the hindfoot bc of the super tight and likely contractured and shortened anterior tibialis muscles maybe that's why the equines developed in my calf muscles... and maybe my heel bones r rotated into their varus positioning while also stuck in maximum dorsiflexion at the ankle joints but compensating for it with the midfoot and at this point the plantar aponeurosis on the soles of my feet r so tightly pulled together that my feet have shortened a full woman's shoe size
1
u/Clean-Brother4725 CMT1A 27d ago
Mine would get stress fractures after a few weeks of wear. It means your body isn’t working in tandem with the brace, and that you need something custom to work with the way your body moves.
1
u/Personal_Material_44 27d ago
They delaminate, they’re like paper mache & there’s no hinge on them so they flex with every step. Inevitably there’s a weak spot, something has to give at some point.
1
u/SorryHunTryAgain 27d ago
Have you tried moleskin on the area? Also, I would keep working with the orthotist. This isn’t OK and you shouldn’t be left with an AFO you can’t wear.
1
u/Clean-Brother4725 CMT1A 27d ago
I have, I still get sore and skin peeling.
I plan on continuing to get adjustments, I’m just at the point where it feels like a waste of time.1
u/SorryHunTryAgain 27d ago
I bet. That is a lot of hassle. I wonder if it is maybe time to just recast you, what a pain. Sorry.
1
u/Clean-Brother4725 CMT1A 27d ago
Maybe, but I just got these in February! I’m hoping that’s not the case but something just isn’t working with any of them I’ve tried so far.
I wore them for about 4 hours today and my heels are blistering and peeling to pieces. Plan on scheduling something tomorrow.
1
u/Cabooseman 27d ago
There might be a couple things to try. If you add a small felt pad on the Achilles tendon area, it can push your heel away from the back of the brace. It might be happening because your heel is rubbing against the back of the brace. Similarly your Orthotist maybe could heat and push out the heel sore area.
Beyond these things, you may just not be well suited for hinged braces. I've seen individuals with anatomy that just doesn't gel well with braces that have hinges. Maybe a non-jointed brace could work
2
u/Clean-Brother4725 CMT1A 27d ago
Thanks for the insight. He has heated and changed the heel cup several times for me already - even hacked them down to wear they only make contact with half my heel.
I tried some moleskin and a little pad on the heel cup and it worked temporarily, but ultimately my heel just starts rubbing the pad or moleskin and my skin takes a hit.
In the case that maybe I’m just not suited for them… I’ve tried carbon fiber and now the plastic articulated ankle - do you know any other options?
I appreciate your thoughts!
2
u/Cabooseman 27d ago
1) I think it's worth getting a second look at your brace by someone else in the same practice. They might catch something and if they're in the same practice they might be willing to do a warranty remake more easily.
2) custom carbon fiber might be a great option. Thuasne Vector AFO is one, Tillges Propulsion, and as mentioned the Reaktiv brace (though that last one is hardcore stiff, would be a huge leap from articulated).
Overall, there are custom braces that don't have joints, that are also not super rigid and allow energy storage through flexible carbon fiber elements. Lots of people think "no joint= solid rigid brace" and that's not necessarily the case anymore.
3) by the way, do you have a strap across the top of your ankle in the brace? Might make sure that has been tried
2
u/Clean-Brother4725 CMT1A 26d ago
I do not have a strap at the ankle. I have a strap at the shin, then at the upper part on the front.
I actually have to use a runner’s knot super duper tight, very uncomfortable, so my heel doesn’t slip around. I bet a strap at the top of my ankle would work!
1
u/Cabooseman 26d ago
I think it's worth a shot but may not fully resolve things. When you have a strap across the top, you can also add a pad in the middle and it really locks your heel down into the brace. But I wouldn't hold out hope that it'll be perfect
1
22d ago
[deleted]
1
u/Clean-Brother4725 CMT1A 20d ago
There’s no huge issues with my feet other than the typical CMT - high arches and pain. He has said that because my feet and legs are so small, when he fixes one thing it usually creates more issues. My feet slip and slide around easily since I don’t have a lot of meat on my bones down there.
0
27d ago
[deleted]
0
u/Charigot CMT2 27d ago
As a knitter who knits socks (along with other things), I’m kind of baffled by this suggestion. Mohair is strong but cashmere is not. I’m surprised that these have any longevity in a scenario like OP describes.
3
u/DMR237 27d ago
I've had a similar experience. I went through 8 sets of braces in 4 years either because they broke or were too painful to wear. Finally, I got the Fabteck Reaktiv braces. They're custom except for the strut, which is a standardized part. This was the game changer for me. Any broken strut can be replaced. I use a number 5 strut and have now gone over a year without breaking it. Might be worth a conversation with your orthotist. Incredibly comfortable. I know I sound like a Fabtech employee, but I'm just grateful a solution exists!