Brace Yourself: My Ups and Downs with AFOs

I used an FES, as a trial one summer. Loved the positive results...then my insurance company would not cover cost for me to take one home. :(
I believe they might cover costs now, but honestly, I did not know how the system would work under long, thick, winter pants...so I've been postponing retrying. I'm still debating the FES and a new wardrobe of pants.
Thanks for the story of your triumphs and mishaps. We all get excited by any positive change and tend to overdo it. I hope the system works wonders for you.

I started my first ocrevus infusion today. I feel good right now.

I have the Turbomed AFO, I live in the UK. It’s a Canadian AFO. It works on the pricipal of pulling your foot up so that you don’t trip. I find it so much more reliable than the nhs plastic one. This one I can wear with a selection of shoes, easily fitted. So far I am pleased with it.

Mike- also look into exercise for foot drop. The MS gym- Trevor Wicken.

Remarkable!

I am having my first full dose next Tuesday. Having completed the first two half doses last October, I remember having more energy and ability to move around one to one and one-half months after the initial split infusion. Right now,less than one week from having the fist full infusion (second treatment), I am wondering if I should have just stayed on Aubagio. My body has NO energy. I feel like I have been hit by a Mack truck. The complete lack of energy and will to even move is something I have not dealt with before to this degree and I am going to be using my emergency wheelchair to get to the infusion center. I am hoping that, like some of the other MS drugs (especially Tysabri), my body just needs it's refill. I am wondering if anyone else newly on Ocrevus is experiencing similar symptoms?

I started with an AFO and quickly switched to an FES, even though insurance did not cover it. It’s been extraordinarily helpful and I believe I’m still walking because of it.
It works fine under all sorts of clothes, except skinny-leg pants, even under long underwear.
I don’t wear it all the time, just when I’m out of the house.

I have a stimulator called a walkaide, it is about a 4 inch wide cloth cuff with 2 electrodes in it. I wear this just below my knee on my affected leg and every time I take a step it applies a small shock to my foot and lifts it up. The cuff has a small electronic module about the size of a small deck of cards held to the cuff with Velcro that provides the signal to give you the shock when you bend your leg to take a step and is adjustable for the amount of power you need. I have wore this device for about 4 years now with much success, however when I have this on my leg it does prevent getting down on your knee without getting it out of the way if you fall and need to get back up.
Dennis

The FES takes a while to set up. Newer pads, in good condition, make a big difference. Very easy, even for the experts, to put the pads in the wrong place. A few centimetres out, and foot does all kinds of strange movements. Allow a few minutes, to get wired up.

I have tried 3 different AFO's and the best one for me was a plastic one where they molded plaster around half my foot, ankle and up to my calf. After it was made they put a valcro strap that looped around the front of the ankle and another around the top of my calf. They put the bottom under the cushion of my shoe. The mold was very uncomfortable so I put the brace on top of the cushion and it was much better. Next I had to get rid of the upper strap because when I would lose my balance, I would hyperextend my knee trying to regain my balance. After all that, it has been very good to me. I have used it for 12 years now. I have SPMS and now I mostly use a roller walker and sometimes two canes for balance, but I wouldn't be able walk with out it. It does get uncomfortable when using it all day. The fiber one that was more flexible only lasted a year because it splintered. A person that makes artificial limbs made this for me and my insurance paid for this. I only use my wheel chair for long day activities.

For me the Bioness L200 became my choice over the AFO for 5 yrs or the Walkaide trial. After 3 yrs. much nerve/muscle function was reestablished. Battle your insurance Co. if they refuse to pay. Start with a letter of medical necessity from your Neuro. and don't back off.

Gary Shamblen
[email protected]

I am so annoyed over the AFO. I am on my 3rd. I wanted something that I could wear with skirts and dresses. I was given one that went the whole length of my foot. Firstly, my foot burned. I was told it was either in my mind or neuro pain.NOT! Had to take pictures of what eventually became huge blood blisters. Then I found out from new physical therapy doctor that it had caused me to hyperextend my right. Also, I was told my shoes were too small. So, I have a new one that I call Frankie as in Frankestein - big bolts on ankle. Bought larger wide ugly shoes. Guess what? Same burning and worse had it on today for 8 hours and can barely walk, excruciating pain.
Early on with Frankie, decided I am going to figure out how to 3D print my own

I have used a Walkaide for at least 5 years. It is less expensive than the Bioness. I use it whenever I go out and sometimes in the house. You can put it in exercise mode and it lifts your toes while you're sitting. Insurance wouldn't cover it but I'm glad I purchased it. It's supposed to have a residual effect.

My most comfortable AFO is a pair of lightweight work boots from a discount shoe store. Driving is easier and I simply tie the laces tighter for more foot drop support.
I am planning to get some lightweight mid height hiking boots next for the summertime.

I have mild foot drop and I use a NaviGait brace that fits around my calf. It has a band in front that attaches with a hook to the shoelace or Velcro strap at the bottom of my instep. Nothing in the shoe and it’s very comfortable and effective.

I went through 4 different hideous MAFOs for foot drop on my right side due to MS. I Finally found the FES WalkAide. I’ve been a loyal WalkAide user for about 4 years now. My insurance also denied the device however, I wouldn’t accept that as an answer. I was fortunate that I could find the $4k cost and then began a concerted effort to get them to cover it. I went to multiple physical therapists and asked them to evaluate my walking using the EDSS timed walking with nothing, my WalkAide, and then with the MAFO of the moment. Three different therapists all separately all came to same conclusion. The WalkAide was clearly what was helping...to be honest I was better with nothing rather than the MAFO with ridiculous huge clown shoes needed to fit the uncomfortable MAFO ! Added to those documents, I had my physiatrist write a few letters. It seemed they would’ve paid for The WalkAide if the foot drop was caused by a spinal column injury ....and that the use of a WalkAide for MS is experimental and they don’t pay for experimental equipment..... my doctors letters focused on the fact that MS is a spinal column injury caused by my own body! Seems after the third rejection the insurance company’s policy was to then to have it reviewed by a specialist in field rather then a claims adjuster ....and I was finally reimbursed what I’d spent. The moral of my tale....don’t stop trying until you know you can’t go any further...it just might work. Good Luck

I have been wearing a carbon-fiber AFO since 2008. I was a runner before I was diagnosed with MS in 2006. Drop foot was one of my first symptoms, but I did not want to give up running. My orthotist from Hanger Clinic outfitted me with a Noodle AFO. I have completed 44 marathons with the Noodle. I tried Bioness and Walk-Aide, but had trouble with them staying on my leg while running. The TurboMed founder sent me samples of his AFO and I like how it does not insert into my shoe and that my calf can activate (I have atrophy from all the years in an AFO). I still have to "learn" how to run with it. I am also working with the makers of the SpryStep AFO on a sleeker and lighter device to help with my running. There are so many products and ideas out there. You have to be your own advocate and find them. Hooray for google! Cheers and thank you for writing this article!

I use a ago device that actually works pretty good. It’s plastics and my foot sits in it and goes up the back of my calf are almost to the knee. It was molded for me specifically. I need to go up a size in shoe in order for it to fit; sketchers/crocs work vest for me easy to get on.

I have been using a carbon fiber afo for the last six years. It works so well for me that I forget how much I depend on it until I take it off. I wear custom orthotics over the top of it that make it very comfortable. My only gripe is that I only have two pairs of shoes that I can wear. It’s a bummer that I can’t wear dresses because of the look but I’m so grateful that I found something comfortable that helps me walk.

I too have had problems from my afo, while it stops the foot drop it has caused me to have hip and low back pain due to my arthritis in my hips and herniated disc. I imagine that if you're only dealing with me it's a viable alternative. I now don't use it, I just use more caution while walking! Walker with seat for testing helps alot!

I started out with an AFO and my physical th erspist recommended bioness. It changed my life. It was for my right leg and totally fixed my foot drop. At the time insurance paid in full. Fast forward 6 years I now need one for left leg and current insurance will not pay for it. They feel fes is experimental. Unfortunately i am not in position to pay for one. If you can I highly recommend getting one. It is amazing!

I recently obtained the Bioness system. What I thought was going to be the answer for my drop foot, has just left me looking for different options. My right foot does not clear the floor unless I vault my leg not bending my knee. I hate having this ‘monster walk’. I’m going to Vegas in over a month and my gf said I should get a wheelchair. I never thought I would be debating this. Thank You all for your comments and shares.

Thanks, very interesting I can relate to so much of it. I am in an AFO and would like to try the Walk Aide but I keep falling and breaking things, (ankle, hip, femur) so once I get all of the medical bills caught up, I will give it a try. I appreciate the information.

Hi - I have MS and I was sold an AFO by hanger which I don't think was the right decision for me. I also tried the Bioness and the Walkaide but in both cases they could not get a good "connection". Thanks to your article I am now looking into the turbomed product. I like the fact that it is an external AFO - I won't have to throw out all my shoes and even better buy bigger sizes. Oh the joys of the MS roundabout. Thanks for the article.

Thanks so much for sharing your story, Mike. I’ve been debating getting an AFO for 6 months. I’m turned off by the limited selection of fashionable shows and also the Velcro (I don’t want it to snag my dresses.)

I’m considering trying a different orthotist. What do you think about that?

Looking for tall winter boots to accommodate a third grade boy with AFOs.

Reading about your experience with the ankle foot orthosis (AFO) is incredibly uplifting! Thank you for sharing your story and reminding us all of the power of perseverance. Keep shining bright!