Anyone else wearing AFO's?: The weakness in my... - AMN EASIER

AMN EASIER

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Anyone else wearing AFO's?

lightnin77 profile image

The weakness in my legs especially my ankles has forced me to have to start wearing ankle foot orthotic braces. They help with my balance issues my stability my gait and has decreased my falls. Anyone else had this?

18 Replies

I wear one on my right foot as I don't pick my foot up properly when walking. Had for about 6 months and it made a big difference to my walking, use 2 sticks as well. However I have noticed it not working too well recently and still drag my foot so being fitted with a FES at Odstock Hospital next week. Also waiting for an AFO for my left foot as dragging that as well but may have to have a double EFS going forward.

Glad to hear this helps you Sue

What's FES?

Used AFO's on both feet for a few years. Made driving difficult, finding shoes hard, and dealing with various sores and wound's from blisters a concern. But in the scheme of things, they were relatively cheap. I found not driving with them on easiest. Switching to a size longer and E width shoes accomadated the AFO's. also, pulling the sole inserts out and using thin ones to adjust he fit. Lace shoes work best. As for blisters, have the technician add padding for the ball of your foot. I got them to work pretty well but without your ankle moving up and down to pump fluid your feet may swell. Invest in some light duty compression socks if necessary.

Now with all of that said, the life changer came when I discovered and received the Bioness EFs for foot drop. I know we all live in different countries with different healthcare benefits so this may not be useful to all. The Bioness device is an electronic device foot drop. It works with a sensor in the shoe, a electronic cuff around the knee, and a controller remote. Basically, the shoe sensor detects your heel coming off the groundand wirelessly tells the cuff to lift the ankle. The cuff applies a electrical charge to the nerves for your ankle and the ankle lifts up. I could barely walk a 1/4 mile in my AFO's but with the Bioness units I could walk for miles. There is also a training mode allowing for ankle exercise while sitting. Awesome device.

The downside of Bioness is they are expensive. I bought my a few years ago for $6500 a leg. I live in the US and my insurance picked up about 70%. They also took a few trips back to Physical Therapy over the first few months to fine tune the software to learn how I walk and achieve the proper voltage levels. Also, it requires weekly or so electrode replacement adding to cost. But I could drive easily by turning them off. No wounds to worry about. No swelling issues since my ankle muscles were working. There is mild discomfort until you get used to the shocking sensation. Also if you stand but lean putting your weight on one leg, you may create a signal causing incidental shocking that could make you fall. Simple fix, turn off the units with the remotes when not walking.

There are many EFS manufacturers. I like Bioness due to their high level of program options.

I hope this helps. I hope you can find something right for you.

azzurri72 profile image
azzurri72 in reply to mariagno

Mate I'm in Australia and have had my bioness for a couple of months and agree with you it is remarkable I would of paid much more it is that good. I want to thank you for your information it sounds just what I've been through, I was wearing my afo with my bioness just for extra support but now pretty much use bioness sometimes just with a support for my ankle. Thanks again.

COwithAMN profile image
COwithAMNAdministrator

Thus is a very interesting discussion.

I have never used ankle foot orthotic (AFO) braces. It's never been suggested to me. I am not sure exactly what you mean by an ankle brace. I do use orthotic shoe inserts.

FES is Functional Electrical Stimulation. I have just recently experimented with the FES device offered in the UK through various hospitals. It's manufactured by Odstock Medical in the UK I believe. After a few weeks during when I struggled to use it, I eventually told the lovely people at the National Hospital in London that it was not for me. This device uses an electrical stimulation to lift front part of the foot. This seems slightly different from the FES device described by Mike that he uses in the U.S. which from what he says seems to lift the ankle. I am envious when he says he could walk for miles wearing it!

The Odstock device just didn’t make a significant difference to my walking. The other problem with it is that it requires wires to connect the controller to each leg and to the foot pad. A total of four wires running down the legs inside your trousers (pants). Time consuming to wire up, unsightly to use, and the controller has to be worn in a pocket which means the wires trail into the pocket from over your waistband, or else you need to make a hole in your trousers. But I would still have done all that if the effect were dramatic - it wasn't.

But that's just my experience. I know that Cherie on this site uses it and is enthusiastic about it.

So I was very interested to hear from Mike about the Bioness FES device. In the US it's at bioness.com. In the U.K. it is at bioness.com/United_Kingdom.php . When I input a central London postcode it list 25 centres where it can be accessed: see bioness.com/United_Kingdom/... Some of these are private but some appear to be NHS hospitals.

What appeals to be about the Bioness device is that it is wireless. I shall look into it. Does anyone know if the NHS would provide?

Best wishes

Chris

Sorry a FES is Functional Electrical Stimulation as Chris states above. I am getting this funded through my local PCT at Odstock Hospital in Salisbury and my doctor and physio had to put a case forward, which was declined and re-appealed and has been accepted. I paid for the initial assessment £140 to see if it helped at all and although the sensation is strange and will take some getting used to it was great to lift my foot so easily and actually clear the floor. Felt I could have carried on walking but only an assessment. They do a unit which is strapped above the knee which reduces some of the wires up to your waistband but was interested in the Bioness above which is wireless.

At the M S Soc meetings I attend there are 3 ladies who use the FES and it has helped them.

Would also be interested to hear if the NHS would provide.

Many thanks Sue

Odstock have started using a wireless FES with a waist box but only if it is a single(needed for one foot). They are still developing the two footed wireless FES as far as I know (ever hopeful). I have had a quick look at the Bioness but I notice that they only use it on one leg. I am trying to remember why Odstock told me a couple of years ago why it wasn't suitable for me. It could have been that it couldn't be used for both feet.

Susan, I am so pleased you won your appeal. Who are you seeing at Odstock? I see Ingrid.

Since we have some people new to some of this, it might be useful to backup a little bit

Walking with toe drop is exhausting. This is because you have to lift your leg higher to clear the toe drop. If your legs are already weak and you have to lift your leg up an extra few inches with every step' it is easy to tire very quickly. And since we already are dealing with gait issues, lifting the leg totally destroys any walking rhythm we have left.

When my toe drop first showed up (in the 1990's), my therapist recommended high top sneakers. This worked a little bit but did little for my image in the workplace. I then tried using over the counter ankle braces or wraps to hold my ankle rigid. My toe drop finally got bad enough to get fitted with AFO's.

In the meantime, my walking range was shrinking. A broken ankle and now using forearm crutches contributed to this but really walking even with AFO's was work. Why? AFO"s hold your ankle at a 90 degree angle. A healthy person's stride actually moves the ankle to less than 90 degrees. This means even with AFO's you still have to raise your leg higher because your toes may still be low. AFO's are also kind of heavy and hot(at least in the Texas summer heat) so more energy is used. So despite making it easier, AFO's are not perfect.

So in 2005, my wife saw a piece on the nightly news about Bioness. I called my physical therapist and she thought they would be great. I kind of wondered why she did not think about this earlier but I dismissed it. I went in, they put a test unit on me and it was incredible. After a little healthcare wrangling, I got my units.

The process is easy. They watch you walk without the units. They then put the cuff on and look for the nerves on the outside of your leg just below the knee. This takes some wrangling because no two people are alike. Once they find the spot, they find the right voltage setting that flexes the ankle without shocking too much. Then you walk and they fine tune. This is repeated until everyone is happy. This process repeats in later sessions because your body responds to the device and needs further tuning. They set when to provide the stimulation, for how long, and when. It is fairly customizable. You end up with three parts per leg: The controller which is worn around the neck, in a pocket, or a purse to make the complete unit. All of this is wireless.

So walking becomes easier because the ankle is fully flexed when walking requiring no extra leg lift. The stride becomes more normal.

So I chose Bioness. But in the USA there is also Walkaid walkaide.com WalkAide is a single knee cuff. I am not sure how it works because I never really considered it. There is a company in Denmark that makes Actigait ottobock.com . There are also companies working on implant systems but I do not know any of these for sure.

Good luck to all and God Bless.

COwithAMN profile image
COwithAMNAdministrator in reply to mariagno

Mike

Thanks for this additional detailed description of your experiences which I am sure everyone has found helpful. My problem is really to do with spasticity which makes my walking very stiff. I would need to solve that problem I think before Bioness would be any better than the Odstock FEs device. I tried Baclofen years ago without any effect but maybe I should talk to my doc about all the other anti-spasticity drugs now available.

All the best

Chris

mariagno profile image
mariagno in reply to COwithAMN

Chris, the funny thing about spasticity is too much and walking is hard, too little and standing is hard. The temperature then adds to the calculation. I have been using Baclofen since 1995 using 10mg tablets. I can use up to 30mg per dose three times a day. Or I can take 20 mg four times a day. Most days it is just 20 mg in the morning and 30 mg at night. I find this flexibility helps a lot.

In the States the other medication used is flexeril which is in a different class of drugs and may provide help in a different way.

Take care, Chris.

I have Bioness for each leg.

Odstock can do implants.

Very interested in all above many thanks, very helpful. Saw Prof Ian Swain originally for assessment, then Mo for first fitting and Ingrid tomorrow.

Will take some getting used too the sensation, but will stick at this as my walking has become terrible. Cannot walk for very long and have ordered a wheelchair to put in car for when we are out so that I can use and not have to curtail walk for husband.

My right foot has started turning in quite badly and the FES has been set up to try and correct with an exercise mode for 15 mins to help. It has felt like my leg has been encased in concrete and hard work so whilst the sensation is weird my leg feels so light.

I am hoping to get the leg strap or the wireless once have settled down, as yes the wires are a bit of a pain, but put on first thing and attach controls when ready to get up and go.

Many thanks Sue

Susan,

I am not sure of your status for walking but I will share one other thing that you may consider. If you are not using a cane or other walking aide, it helped me a lot. I started with a cane but after a broken ankle, I switched to forearm crutches. I found them useful after switching to the Bioness units, they added a lot of stability and helped with my stride.

Good luck to you.

I don't think FES would work for me or bioness I suffer from hyper sensitivity to stimulus in my lower limbs the thought of any electrical pulse sends shivers up my spine. The AFO's help my foot drop and my weak ankles. I too take Baclofen but unlike some others it works fine for me. It's been interesting reading all the responses its amazing to me the diversity of available treatments from one country to the next.

Cherie - saw Ingrid today, very helpful and booked to see her in 6 weeks.

Mariagno - tried crutches but could not get on with them, use 2 walking sticks which give me a better posture as suffer with back and makes me push myself up straighter when walking. Hope with FES however I can eventually lose both sticks, time will tell!!

I have tried Baclofen but did not help me.

Many thanks for all the above Sue

Cherie profile image
Cherie in reply to SusanBr

Hi Susan

If going out for a walk I use the FES and nordic walking poles which I agree makes me stand up straighter as I also suffer with my back. I belong to the MS therapy centre and we go out walking once a week with our poles, although this was our last week for a while. I always take poles on holiday with me - even to Rome this year.

Just to add my experience, I had Odstock FES fitted last week (to my right leg initially but may progress to both if this one works out) at the National and so far so good. It definitely seems to make walking a little less akward meaning I can keep going for longer and suffer less pain in my back than usual. In response to lighnin77's concerns. I also suffer from hypersensitivity in my feet (to a lesser extent in my legs), and FES does not seem to aggravate it. The only time it did was when ripping off the sticky pads at the end of the day, but now I have no hair left on those bits of my leg so it's fine now! I would definitely recommend giving it a go, although I was told it only works in about 50% of those with AMN.

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