Design: Leg Braces, AFOs, Used in the Treatment of Charcot-Marie-Tooth (CMT)

Kevin discusses some bracing design options based on functional deficits associated with Charcot-Marie-Tooth (CMT) disease.
- Kevin Matthews, CO/LO

[@abernathymonsoon4638]

Getting fitted for AFO's next week. This was very informative, thank you.

[@bjyount1]

Thank you so much for this video. I just was fitted today for carbon fiber orthos. I have CMT and you are spot on especially with the balance issues and touching a wall or person...i do that all the time when i have to stand in line. Very informative...thank you.

[@AdvancedOrthopedic]

We recently published this video on AFOs in the treatment of Charcot-Marie-Tooth disease, CMT. It's lengthy but worth the time in you work with this population. I also discuss fundamental dynamics in AFO design and treating the existing deficit. Lots of info.

[@martinfisher7193]

This is an excellent video! Thanks!

[@guilhermenorway]

great information a hug from Brazil thank you

[@rubymckay4172]

Im looking at this video on behalf of a friend and for someone who is new to all this,its very informative and essy to understand. Unfortunately we're over here in Ireland and will have to find someone!

[@joyceannetesta6728]

Thank you -What a breath of fresh air!!! For all the knowledge you shared about Afo's and explaining Cmt more preciously. In the past 20 years since I have been diagnosed, not 1 of the neurologist explained it - in layman's terms - as you did!! Thank you. I live in SE Florida (palm bch- miami) and what I find is-the orthotist- just want to make the classic Afo-heavy thick plastics, awful they don't smooth the edges nicely,, they don't want to cut them, they cant heat out bad calluse areas and so on. Its very frustrating, depressing and I feel hopeless- that they can not make the correct adjustments for pain and also keeping a low profile on the looks.of these afo's. Shoes meant the world to me from heels to now- there is not much choice in a descent looking feminine sandal or shoe that the Afo's will fit. I don't know why, the orthotist are not very accommodating to custom fit the braces for us females- who those of us, who do care how we look. I hide mine- and I do not wear shorts or a dress . i have a pair of carbon fiber- however, they are in BLACK. and dont feel right- the same with the plastic afo's- clear would be nice. Sorry- just trying to express all my feelings on the Afo's and finding a caring and educated orthotist, as you are. I am open to any new style, designs you may have. I have the white, 2inch below the knee, I did wear and like them shorter to the calf- and wore for a few years, ( some line marks on calf)now they tell me I need them higher for support? They are brutally hot- thick. what are your thoughts on a lower afo- - I have foot drop in both, a lot of weakness, balance issues, chronic neck n back disk issues.. The new afo's they just made me - I feel the calf is pushing me forward too much after they cut down some of the brace- now my hips hurt- I was told my left leg is longer- shouldn't they make an adjustment for that on the afo? I just don't know. anymore! I saw photos of the spring leaf- open back- I was told they will crack?? help please- Your advice is much appreciated. Thank you again-

[@AdvancedOrthopedic]

Hello Joyceanne, The orthotist should be able to modify your AFOs for comfort and pressure relief when needed. As to the design, I believe we need to be close to the knee to distribute the pressure over a large area. Short AFOs are more difficult to tolerate and I don't make them. I don't believe they are right for you. As for shoes, there I'm afraid we are are limited. Just about the only option are athletic shoes and typically wide width is needed. The brace can be modified for leg length differences or an elevation can be added to the shoe. Stylish shoes are not really an option and I understand your frustration, I hear it all the time. As I said in the video, there are many design options out there, almost none work with stylish shoes. You should be able to find sandals to wear with them, but not stylish sandals. Not much good news here. There is no clear plastic compatible with making AFOs that will not crack or break. I know this doesn't help much. My designs also tend to push you forward in gait, the trick is to go with the push and step right through. They help with propulsion and you tend to use less energy to walk. This is a simplistic explanation of a complicated principle. Take care and feel free to call with questions. Kevin 210-657-8100

[@elicharoberts1764]

Thank you for posting videos such as this. I am a first year Masters student at CSUDH and I happen to learn better visually than by books and this really helped me out for my finals this next week. I appreciate your knowledge! Keep up the great work by passing along the knowledge.

[@AdvancedOrthopedic]

Elicha Roberts Hi Elicha, I'm glad to help. You might tell others in your class, it may help them as well.

[@elicharoberts1764]

Advanced Orthopedic Designs I went to class yesterday to have one part of my lower limb orthotics final and to my suprise, a video you had posted was part of the final. Way too cool. I had not seen the video before, but I will keep learning from your posts. :-) Thanks again.

[@AdvancedOrthopedic]

Elicha Roberts Cool. Which video?

[@AdvancedOrthopedic]

Hello Robert. New AFOs would be covered under insurance plans since there has been a physiologic change in your condition. I would recommend you consider a more rigid design since your calf muscles have weakened. Weak calf muscles need to be aided as do weak muscles to pick up the toes. New AFOs can cost from $1200 to $2000, depending on the design. If you go with some of the hybrid designs out there you can spend much more. I would recommend you consider the Texas Turbo design, my favorite, but then it would be since it is my innovation.

[@oliverdebattista4812]

hi i am from AU i just want to say thank you so much for giving such a great information video . i have CMT

[@AdvancedOrthopedic]

You're welcome!

[@martinneumann9345]

I would encourage anyone getting Afos to have them evaluated after receiving them. You need to find a medical facility that has motion analysis laboratory. They can help reveal the efficacy of the afo before use. My first set of afos was designed incorrectly and injured my foot and took 2 years plus to heal. An evaluation by a motion analysis lab prior to use would have avoided this injury.

[@andersonfaleiro138]

Eo que vc usa hje

[@curtisallred7250]

AFO'S are also made for Cerebral Palsy. I quit wearing mine because it kept putting so much pressure on my foot and it was very uncomfortable. I had it adjusted so many times at Shriner's Hospital in Lexington, KY and it still gave me trouble. I couldn't even stand on my feet for long periods of time.

[@thornwarbler]

Top notch as always, thanks for the benefit of your experience

[@AdvancedOrthopedic]

Thank you.

[@pamdavis9077]

Have CMT he is so informative! Are there newer models in 2020 now?

[@lindawithsharks]

I have CMT and can't stand on my toes anymore. My carbon fibre AFO's got covered by my insurance (Trulife matrix). They changed my life!

[@jimdennis8965]

Absolutely great information, many Thanks

[@pamdavis9077]

Kevin, can you recommend someone in North Carolina that can fit/make the last one you talked about?

[@RobDQF]

Hello, I have CMT where my foot drops and cant raise my toes either. I have braces but I have progressed over the last three years where my calves have shrunk which makes the braces a very poor fit and I have a very difficult time standing still / walking .. Sometimes my leg / foot swings back and my toe catches the back of the other brace causing me to fall. Does Obamas affordable health care plans cover AFOs like I would need? Roughly how much does it cost to have them made for me? Right now I am uninsured. Thank you for your time

[@bigal0172]

Hello Kevin. I have cmtx and am not able to dorsiflex or plantar flex. I've been wearing the same type of AFO's since I was diagnosed in 2007. Balancing myself has become more and more of a problem. Which one would you recommend? The last one you speak about seems to be more suitable for my problem and how do I go about getting fitted by you? I'm in Westchester NY. The place I go to to get fitted leaves me with the impression that they seem to not really care about the patient and care more about making money.

[@AdvancedOrthopedic]

Hello, I would definitely recommend a rigid design like the Texas Turbo. It helps with DF and PF weakness. We offer fabrication services for facilities around the country. If you would like you can have your orthotist call me and I can explain everything to him or her. You may need to change providers if they are unwilling to offer this service. Feel free to call with questions. Kevin 210-657-8100

[@Bohemianprime]

Thank you for your videos. They have been very helpful. I have CMT and I am an Adaptive equipment specialist. I have been recently working with refurbishing the orthopaedic shoes at my facility. I am interested in trying my hand at making AFOs as we have a good many at our facility that wear them and I foresee myself needing a pair eventually. Where should I start?

[@AdvancedOrthopedic]

I would start with an orthotist. Making them is difficult without training

[@poonamsvideoblogs]

This is so helpful. O had a pair of Carbon Fiber lift offs in Jan 2020...that did NOT work. They seemed to work but never for long. It was as if there was too much fwd movement. Langone NYU. Sad. With pandemic I just gave up. You gave me a lot to consider. Do you have recommendations near Albany NY.

[@kevinmatthews683]

Sorry, I don't know anyone in the area. Find someone with a lot of experience with CMY. Most seasoned orthotists are well aware. Glad you liked the video

[@10mrturbo]

Let me know if you could use another Cert. Orthotist 25 years+ experience!

[@30endlesslove]

I'm glad though the blue one moves at the ankles..

[@Traceydtlc]

I am curious to know if these braces would work for an extreme case of CMT which my mother has. She has progressed to the point where she can no longer walk and is in a power chair.

[@AdvancedOrthopedic]

Tracey Durrani Hi Tracey, I cannot say whether or not these would work without a comprehensive evaluation. I have not yet seen a case I couldn't help with bracing. She may need more than an AFO, but without muscle and range of motion testing along with other considerations I simply cannot say.

[@vampiregoat69]

I and my daughter have CMT1a and I am looking to get new braces and heard their were some new technology since last time.

[@Virgo-zx3ez]

Are you in the US?

[@orlandomontes78]

The Leg braces are so uncomfortable. They all say that they will do it custom made and it will be better than the others. And I know they have good intentions but it is a hard plastic and it is not comfortable. It is a pain in the behind to drive with those braces. At this time and age they should do them that we can lower them to drive and put it back up to walk. And make some kind of memory foam or something instead of walking in that hard plastic material.

[@AdvancedOrthopedic]

I agree they can be uncomfortable, especially if you have challenging alignment issues that require force to correct. We are very limited by what we can do with padding since it has to fit inside a shoe. For driving they can be especially difficult and for some dangerous. I recommend you remove the AFO to drive. It is a pain to try to put the AFO on inside a car when you get where you're going, but safety is more important. I wish I had better answers for you, but we are limited by technology and what will fit in a shoe.

[@disableddanceartistcdnkiwi7871]

My AFO's are amazing...not uncomfortable at all. They fit perfectly and driving is no problem.

[@Neoplazmatski]

Thanks for sharing the expirience it's really nice to listening and watching you and your hole lab team. You said you have soft insets in some of AFOs 3-5 mm material + 3-5 mm PP. What kind of shoes do you prefer for AFOs. Normaly kids or adults don't want orthopedic custom made design shoes or insuranc don't pay it. It's enought one or two size bigger, is the best to have the neutral positionated shoes. Thanks.

[@AdvancedOrthopedic]

The shoe size changes very little, 1/2 size or one width typically. Athletic shoes with removable insoles, neutral alignment. The AFO does all the work. The shoe helps hold you in and is a walking surface.

[@redamohamed4239]

how make this

[@junocayanan6360]

Do you have AFO brace here in the Philippines?

[@sarahgoulet7654]

What if your orthotist only puts you in the full hinged afos and does not go over all other bracing options for personal considerations? Also your hinge afos look less bulkier than what i was given. I would love to try the carbon fiber or the leaf spring something that i think would work better for my level of cmt.

[@AdvancedOrthopedic]

Hi Sarah, I don't know your situation so I can't opine. You should discuss this with your orthotist or find another orthotist. Good luck!

[@MeredithMasi]

What’s the official name of the black AFO that’s for someone who doesn’t have plantarflexor strength?

[@saleemahx1294]

My son Xavier happens to have CMT 2A. we live in riverside county in state of California. Is there someone out here that can help us get your Texas turbo bracing. He has been wearing the full Afos with range of motion for 3 year now. He had the push off muscle but, not any more. That ability went away a year and a half ago. I would like to get a pair or your texas turbo bracing for my 5 year old.

[@patthyboo960]

soy de Peru mi esposo e hijo tienen Marie charcot y como me gustaria poder tener ese tipo de ortesis porque aqui no las hacen asi y es tan dificil por mi pequeño que al igual a mi esposo le es dificultoso caminar

[@kaijumichael8721]

Hi, My name is Cindy and I have Charcot-Marie-Tooth's Disease. I have used many, many different braces on my legs and feet. I currently have the, Phatt brace. They are falling apart and are cumbersome. My first pair were the old fashioned hinged type. That was many years ago. I've been bracing since 1999. I was diagnosed at about 30 years of age although I've known something wasn't right my entire life. I am now soon to be 57. I have foot drop and my left foot rolls to the outside, ALOT! I am wondering if the blue hinged brace you are showing would be good to wear for shifting (with my foot) on my motorcycle? Thank you so much for reading.

[@AdvancedOrthopedic]

Hi Cindy, I don't feel a hinged AFO would be indicated for you for day-to-day use. I think you would be better managed in a more rigid design, like the Texas Turbo. Having said that, the Turbo would not be the best design for motorcycle riding. I've had several bikes over the years and know what a joy they are. I would say you could get a hinged design for riding, but use a rigid design for most of your other activities. Your insurance would probably only cover one brace, so you would be out-of-pocket for the other. Feel free to call with questions. Kevin 210-657-8100

[@kaijumichael8721]

Thanks so much for your reply! I apologize for taking so long to reply back. Well, I've been watching some of your other videos and you really seem to know your stuff! I appreciate the advise. So, far I've not found a brace that won't throw me off balance. The tall braces are confining and the short ones not enough stability. Ugh! It is really a nuisance. I do like the idea of bracing more in the front so as to have my calf free! I have such a left ankle roll that any brace I've had to stabilize it really doesn't as my ankle just rolls over in the brace. Usually causing pain. I may just have to give you a call about this. Thanks again, so much. Cindy

[@SeeDIfRiT]

your example with the high arch, when you did you foot it was slapping. Do you have the symptoms your saying? Only Asking Cause I work for an orthotics company, We don't do full braces up the leg. just like insoles only. But basically try to do the same thing your achieving

[@alhajiconteh3004]

I have a post polio that deformed my left leg, I can`t walk without holding my left thigh. Do you have any solution for me? Thanks

[@AdvancedOrthopedic]

+Abu Aminah It sounds like you have quadriceps weakness. You probably need a locking knee orthosis. You should see an orthotist or orthopedic doctor for a recommendation.

[@tobreezy4u]

Hi Dr, do you have any place you can recommend for these products in Wisconsin?

[@AdvancedOrthopedic]

Hello, there is not anyone in particular I would recommend. We do work with other facilities. We offer fabrication services for our products through orthotic facilities if they are willing to work with us. Feel free to call if you want more information. Kevin 210-657-8100

[@tobreezy4u]

@@AdvancedOrthopedic Thanks for the response. I will definitely reach out.

[@andersonfaleiro138]

Ola doutor uso edta de carbirno.porem ela queima o.pe vc teria algo mais melhor de usar grato

[@adamstrickler8609]

At what point do I consider talking to my doctor about amputation below the knee I've had CMT since I was a kid from 39 and only recently diagnosed with it although I know I've had something going on with me for many years and it's only getting worse they cannot prescribe me any medication to relieve pain out of fear of addiction so what can I do I have AFO braces I do physical therapy and nothing seems to work

[@Virgo-zx3ez]

Adam Strickler I've been considering the same thing lately. I'm just not sure that the rest of my body is strong enough to make a difference 😂.

[@Virgo-zx3ez]

Adam Strickler also, I use cannabis for pain and every other symptom... it has dramatically helped my quality of life! Don't take pharmaceuticals for the pain! I went through that and it wasn't helpful! I've gone from 40mg of methadone a day to 3 joints a day! ☺️

[@AdvancedOrthopedic]

Hello Adam, Amputation is only something that you can decide. You will probably have a very difficult time finding a doctor that will remove a viable foot. If you think about going this route you should contact the Amputee Coalition of America. They can put you in contact with someone who has undergone a similar presentation. I would also consider going on one of the CMT support groups and talking to someone with CMT that had an amputation. Getting the leg removed may not eliminate the pain. There is a lot to consider, but the prostheses we make today are pretty amazing and it could possibly change your life for the better. Just remember there is no going back. Do your research!

[@disableddanceartistcdnkiwi7871]

That sounds tough, Adam. Have you seen an orthopaedic surgeon who is experienced in correcting CMT foot deformities?

[@IPSHU2021]

Which type AFO is suitable for bilateral flail ankle with no sensation. Strength good at knee And hip

[@AdvancedOrthopedic]

I would recommend a rigid triplanar control AFO like the Texas Turbo. There are other designs that work well like the Phat brace, DBS AFO and Helios.

[@reginahays3185]

what about knee hyperextention ?

[@michealalmalik188]

How we can find your stuff in florida ?

[@AdvancedOrthopedic]

We offer fabrication services to companies across the US. You would need to find a local orthotist that will work with us. If they have questions they can call me, Kevin, and I will explain the process. 210-657-8100

[@rowanquinn9691]

I have cmt I am 12 years old I got surgery two years ago 7 incisions in one leg 9 in the other I am very weak with my hands and legs I can't jump or run my ankles and wrists are very thin I don't have a lot of balance if you have CMT comment your story

[@mikemarrs9946]

How do I contact your office if you are still practicing?

[@AdvancedOrthopedic]

You can call us at 210-657-8100

[@user-ww4vf2sb2d]

I need your help. No one have made my braces for me to be able to walk.

[@kevinmatthews683]

I am retired, sorry

[@RikkiTheTikiMan]

what kind of doctor so I see for Cmt, I was thinking about a foot doctor but then again a neurologist maybe??

[@AdvancedOrthopedic]

I would recommend you see a PM&R physiatrist, which is physical medicine and rehabilitation, or an orthopedic doctor.

[@30endlesslove]

all braces are very uncomfortable they hurt under the foot...the leg is higher on one foot effects the knees hips then back gradually causing scoliosis...

[@AdvancedOrthopedic]

Use a heel lift in the other shoe to balance your pelvis

[@Virgo-zx3ez]

Are you in the United States?

[@kevinmatthews683]

Yes, San Antonio, Texas

[@mahamednasr9269]

Can I call you to order 1pair?

[@willdov6321]

I have cmt and I'm very concerned how many of the people on this thread is unaware of where to get help or what kind of Dr you need to see to get orthotics?

[@AdvancedOrthopedic]

Any doctor can write the prescription. If you'd like to see a specialist I would recommend a Physiatrist or Orthopedist. Another approach would be to get a prescription from any doctor and then see an orthotist for the design recommendation. The orthotist should be able to recommend a design that is based on your specific deficits and lifestyle.

[@pamelaellis8723]

You can see a podiatrist or an orthopedist either way they can write a prescription. The thing that sucks though is that it's difficult to find a place where they can actually make a fos for CMT patients. Casting and bracing for CMT patients is difficult because the disease progresses over time and so the arches in the feet get higher and it causes more de foot deformity so when you go to actually get a pair of braces it hurts because your foot is deformed

[@willdov6321]

Pamela Ellis I see my Dr every 3 months. I can get a new cast for my insert once a year. Insurance pays for it. The usually do the cast or mold as I guess it's called in office. They send them out usually takes 3 weeks.

[@juansilva8861]

Quiciera que lo traducido en castellano gracias

[@arthurjohnson6240]

What if I can't bend down far enough to strap them on?

[@AdvancedOrthopedic]

This could present a problem. Do you have anyone living with you that can help?

[@arthurjohnson6240]

@@AdvancedOrthopedic No I don't. I live and make a living for myself.

[@AdvancedOrthopedic]

@@arthurjohnson6240 You might consider working with a physical therapist on flexibility and dexterity so you can put them on.

[@arthurjohnson6240]

@@AdvancedOrthopedic yes sir. I feel right now I won't able to never reach my feet or bend to the floor.

[@miguelp189]

Would bracelet work for a Charcot Foot Patient? I am as recently diagnosed with Charcot foot on my left leg. I am looking for a solution before it’s too late

[@AdvancedOrthopedic]

Yes, we do make braces for Charcot foot. They should be available where you are. Kevin

[@elizabethkeenan9074]

I HAD A BLACKOUT IN FEBRUARY 19 AND I WAS ON THE FLOOR FOR 26 HRS BEFORE MY EXHUSBAND FOUND ME I WAS TAKEN INTO HOSPITAL FOR 17 DAYS I CANT WALK ON MY OWN ATALL I HAVE TO USE A WALKING FRAME FOR AROUND HE HOUSE I CAN'T EVEN STAND ON MY OWN I HAVE A WHEELCHAIR ,WHEN I USE MY WALKING FRAME I DON'T EVEN LIFT MY LEG UP I JUST DRAG THEM ,BEFORE I HAD THE BLACKOUT I USE DO A LOT OF WALKING AND IT SO FRUSTRATING BECAUSE I CAN'T WALK WITH OUT THE FRAME ,IAM JUST WONDERING IF IT COULD BE CMT AND MY HANDS R WEAK TO AND I CAN'T LIFT MY LEGS ATALL , COULD YOU GIVE ME SOME IDEA WEATHER IT IS CMT I ALSO HAVE SCOLLISES IN MY SPINE ,I HAVE HAD A QUITE A FEW BLACKOUT ,THE SAY IT THE HEART RHYME MISS A BEAT AND I BLACKOUT ,THE LAST ONE IN FEBRUARY WAS THE LONGEST ONE.IAM HOPING U MIGHT BE ABLE TO GIVE ME SOME IDEA PLEASE THANKING YOU

[@Hesam0000]

Problem with these braces is that neither take into consideration the fact that our knees are not working either so we can't stand straight without knees bending.

[@AdvancedOrthopedic]

These designs are indicated mostly for weakness below the knee. There are other designs to better address knee weakness, which is less common in this patient population.

[@Ian-np5jo]

My mother and I have been talking about the Texas Turbo and DBS. This knee question brings up a concern. I have CMT and I have thin muscles from the thigh down. As if there is to much weight on my knees after walking half way around the block. How could Turbos help?

[@AdvancedOrthopedic]

The rigidity at the ankle helps to prevent buckling of the knee when there is weight through the limb. If the ankle is prevented from motion it makes it harder for the knee to give out, if that makes sense to you. It's a little more involved than that, but this is basically the concept.

[@Ian-np5jo]

A little. So these could maybe help get around the block? or able to stand for a job? After about 100 or 200 yards I begin to feel heavy and need short breaks to recharge. My foot isnt rolling and It looks completely normal minus the muscle absence. Do you believe these could get me up and walking more without always looking for shortcuts or bailing because I dont know the landscape before hand?

[@Ian-np5jo]

Im 27, so Im trying to get braces before I let it get more out of whack. Only have money to take one shot at it though.

[@30endlesslove]

I think the the foot plate should be flexible contoured the foot so people can exercise the calf muscles

[@DrDenham]

These braces have none of the energy storing capacities of carbon fiber. Plastic cannot sustain the strength and transmit force as carbon fiber does. This makes a weak argument for anything worth having. I spent a lot of money on my braces after investing way to much money in inferior products. I have used all of these designs with minimal benefits. The only brace that I would ever recommend to someone with CMT is the Helios Brace, made by Ortho Designs, in Las Vegas. I am almost able to jog, something I wouldn't be able to do with a rigid plastic shell or plastic AFO, or the carbon fiber brace mentioned in the video.

[@AdvancedOrthopedic]

Hi Chris, I guess you are either a plastics engineer or an orthotist. I've been at this for 32 years and I disagree. Perhaps you have had plastic AFOs in the past, but you have never been fit with a turbo. Almost being able to jog is being able to walk. The Healios is a good design, but costs much more. Polypropylene will store and return energy. Always has. I admit carbon does it better, but carbon is not adjustable. I'm glad you got AFOs you like. I am curious how much you paid? The Turbo is covered by insurance. This can be an issue for those without thousands laying around.

[@dnspainting]

Thats why he said he "Reinforces the Plastic ones". He also said that they are a lot less money. I 100% disagree with you because #1 every single person on this planet that has CMT (or other) is unique in movement such as Motoring loss-Muscle Loss-Bone Chaffing-Ball of Foot Issues-Balance-Hammer Toes etc etc etc It sounds like this Doctor actually listens to his patience.

[@AdvancedOrthopedic]

TuckerTee FudPucker Thanks TuckerTee

[@dnspainting]

Advanced Orthopedic Designs Hey no problem. I have been serching for so long for a good product (Braces) for two (2) years now for a good thin leg brace that fits in a sneaker. How can I call you to order a pair? Maybe the 'Texas Turbo AFO'?-how much is that one?

[@AdvancedOrthopedic]

TuckerTee FudPucker The Turbo costs around $900 each and are covered by most insurances. You would need to go through a local orthotist or come to San Antonio. Our # is 210-657-8100

[@disableddanceartistcdnkiwi7871]

This is a really great video. Thanks!

[@kevinmatthews683]

Glad you liked it!