Anyone used an orthotic device (AFO)?

Everyday living
1

I had an appointment with the orthotist last week and it left me feeling a bit depressed. My symptoms are not too bad but I do have slight foot drop and now walk with a bit of a limp. I have only just got used to not being able to wear my heels (though I do occasionally change into a pair of kitten heels - indoors only) but he said that the orthotic devices he can offer work only with trainer-type shoes with laces or velcro.

He said that although my symptoms are progressing slowly he is thinking 10, 20 or 30 years ahead. He told me off for not doing my physio exercises every day to stretch the muscles at the front and back of my calf and ankle and said that if I continue like this my muscles will shorten and atrophy and I will suffer pain and my walking will be worse than it should be.

I have another appointment in 6 weeks when he advised me to return with a suitcase full of shoes to see which will work with what he can offer. When I asked about other options he said that he doesnā€™t rate the foot-up cuff thing that the physio gave me (I agree - it didnā€™t do anything for me and was bulky and uncomfortable) or the lycra foot-splints sold by one company. I forgot to ask about FES which is another option. The only other thing he mentioned was the silicone foot support - called SAFO I think. However he wonā€™t prescribe this because of the cost - privately it costs around Ā£800. FES too is available only privately in my area though I can arrange to trial it via my local Therapy Centre.

I am due to see my physio again this week so will run this all past her and ask for a more rigorous exercise programme but I wanted to ask your views. Should I give the NHS orthotic device a go or is it a waste of time and likely to end up stuck at the back of my wardrobe with my gorgeous red and purple heels (sobā€¦)? What in your experiences are the best options a) to help normal walking and b) for devices to wear with non-boring (flat) shoes.

Hilary (formerly known as Imelda) x

2

Gosh, Hilary, your experience sound just like mine (only I donā€™t wear heels).

1st Orthotics appt: Shoes off, feet plonked into a tray full of foam (effectively taking a mould), ā€œRight, we will be in touch, good-byeā€. A nice young lady, but a poor communicator.

2nd Orthotics appt: Told to take my shoes off (itā€™s a guy this time), a pair of moulded insoles are produced, stuffed into my shoes - which go back on my feet, and I try to walk. Two steps are enough to prove that the shoes are now too tight and impossible to walk in. Shoes off again, guy removes the insoles, rips (literally) the original insoles out of my shoes, stuffs his back in, shoes back on and I can walk in them. Then he produces a device called a ā€œFoot Upā€. This goes under the shoe-laces, hooks to a wide strap round my calf, and lifts up the dropped foot. OK, I can walk (still with one stick) with a lot less foot dragging than before. ā€œOK, try that, you will get a follow-up appointment, but it will be in several months timeā€. I point out that the shoes that I am wearing are the loosest pair that I have, and the insoles may not fit in my other shoes. He does not want to hear this. more talkative, but another poor communicator.

This takes place in our local Community Hospital, has been arranged by an NHS physio, via our local NHS district hospital, but the orthotics people come from a private contractor. I head back to the car, and the calf-strap of the ā€œFoot Upā€ has slid down my calf, and stopped lifting my dropped foot. I get home and start experimenting. The moulded insoles will not fit in any other pairs of my shoes. The ā€œFoot Upā€ will only stay in place if a pair of shoes has enough lace-holes, and I cannot get the calf-strap tight enough to stay in place. Another product of the Chocolate Fireguard Company.

Note here that I mentioned the FES approach to my Physio and both Orthotics people, and none of them wanted to hear what I said.

A few days later and I have a routine appointment with my Neurologist. He observes the dropped foot, says ā€œI can do something about thatā€ and refers me to Odstock Medical. That was in January, and by mid-Feb I have had my first appointment at Salisbury. I have done the training routine and been wearing the FES for a month now. It works (I just have to allow an extra 15 minutes to get dressed (for the wiring up).

There are private alternatives to the SAFO and I donā€™t think they cost as much as going through the NHS. What they donā€™t do is to give any stimulation to the muscle that is not ā€˜getting the messageā€™. The FES does activate the non-functioning muscle and does seem to give a tiny amount of flex at the knee as well. That helps.

Most of the time I need two walking sticks, and I continue to use them with the FES. But, I have managed to walk without any sticks (just the FES) for up to 100 yards. OK, so it is a bit of a lurch, but it is more than I could do before.

Personally, I would fight for a referral for FES, and I will tell the Orthotic people just how little help they have been. I am considering getting another pair of shoes that I can fit the moulded insoles into, though. Just to try. It might help.

Geoff

3

Another vote for the FES here. I have used one for ten years and find it far better than other options, because it actually helps build muscle strength if used regularly. The muscles will become isolated and simply waste using a traditional splint.

A foot up can be useful if the problem is not too bad, but they do come in three sizes and the fit is quite important.

Itā€™s a good idea to consult a physio for an exercise programme, but they wonā€™t do much just left on a bit of paper.

If you have PPMS (or any type really) it might be worth looking at ldn as a possible treatment. www.ldnresearchtrust.org

I admit to being completely bemused about the high heel issue and canā€™t offer a sensible answer.

4

l find trainers and other flat shoes too difficult to walk in. l trip up all the time. My foot-drop is severe - l can not move my ankle /foot/toes at all. l did use a FES - but found it such a fiddle to use and the constant buzzing too much. For 5yrs now l have worn a SAFO. lt fits in to most shoes - and is very comfortable - and you can wear it without shoes on - l use it for yoga class. l find after taking it off- your foot still reacts as if you are still wearing it for a while. l have tried MBT shoes - they allow the foot to roll heel to toe and pickup. Recently, l have bought shoes from Clarks on-line - they do a version of MBTā€™s called Wave. They are very easy to get on and so comfortable - in fact l can wear them with out the SAFO - they really balance you. My OH has now bought a pair of Wave shoes - and he has diabetic neuropathy - and certainly walks far better in them. l also like shoes with a wedge heel -and a strap across to keep them on. When you canā€™t move your foot/toes it is very difficult to get shoes on - and keep them on.

Clarks on-line - is free postage and returns. Gives you a chance to try different sizes - and walk about at home in them.

F.

5

I am very heavy, my feet are sensitive, Plantar fasciitis, Achilles Tendonitis, Arthritis. Nothing I have purchased before including at the Podiatrist office has been this durable and this comfortable. I know I will buy more in the future as they wear out. If you are thinking about it, donā€™t, your feet will thank you, I know mine have by being painless. orthofeet is very comfortable.

6

Looks to me like a sales post. These have nothing to do with MS or foot-drop.

Sue

7

Hilton donā€™t hide your fab shoes away foreverā€¦I sent mine to the charity shop as they were in lovely condition then regretted doing so as I then had to sit through a wedding reception in my ugly trainers hidden under the table.

I could have cried because I no longer had the shoes which matched my outfits.

My lovely friend actually wizzed off to the charity shop and bought back a pair of my shoes which I now carry with me to special occasions and once seated ( which will be for the entire event ) hubby swaps my footwear and even though I canā€™t stand in my heels let alone dance at least I can feel glam.

Ell

8

Oh ell, glad you can feel glam, brilliant.

i have always struggled with girlie shoes and heels, so less traumatic to have to wear trainer type things etc. But the rigmarole to try and get shoes that work at all with foot brace is very tedious, and you tend to wear a pair of shoes to death. Also, I would like a smart pair that I could try and wear with smart trousers at least, on those rare occasions.

9

I have now used a SAFO for 10 years and itā€™s wonderful. Splash on some talc on my foot in the morning, fasten the 3 Velcro straps and thatā€™s me set for the day. Iā€™m now on my second SAFO. The first one lasted 8 years, so at less than Ā£800, itā€™s been great value. I wear it whilst walking in the swimming pool. Similar to Campion, when I take off the SAFO, my foot reacts as if the SAFO was still on. I canā€™t wear narrow shoes, but no big deal. Clarks seem to have the best availability in terms of wider shoes. Also I canā€™t wear any type of shoe that is ā€œthickā€ at the front as I tend to stumble a lot more.

years ago, I used a foot-up when my foot drop was milder. Over time though the foot up wasnā€™t enough for me.

Also, three times now the physio has tried the FES with me and unfortunately on all three times, the FES did nothing for me. If you do try FES, I hope it works for you. As mentioned by others, as well as helping you to walk properly, the FES helps remind the muscles what they are supposed to be doing.

i find that frequent mild exercises are essential to try and maintain as good a walking style as possible.

derek

10

Iā€™ve used FES since before I was diagnosed and wouldnā€™t be without it. Iā€™m sure itā€™s kept me walking for much longer than anything else would have done. Iā€™ve never been one for high heels or glamorous shoes so thankfully that hasnā€™t been an issue. I wear trainers in the summer and fur lined DMs in the winter. I wear basketball shoes that match my dress for a summer wedding or DMs for a winter one, I always ask the couple if itā€™s OK and theyā€™ve all been fine so far!

11

I have finally accepted some very sensible advice and help after a physio appointment. I am currently suffering from a weak left leg which is new and my walking has deteriorated. A wonderful physio reassured me and supplied a device which lifts the toes and has really helped. I have also grudgingly accepted a stick and perching stool while reassuring myself that they are temporary to aid with fatigue. The foot brace thing is really helpful and Iā€™m hoping it will help me get back to work.

12

your Plantar Fasciitis and increase the pain in your feet. Slippers designed specifically to give you support and protect your feet will help them stay healthy while you walk around your home.plantar fasciitis house shoes to protect your feet

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13

LNeigh07 this is so reassuring. I am really struggling with my left leg this week and have fallen too. Itā€™s very scary and I worry that I am getting worse very quickly. I am on antibiotics atm so hoping things will settle when I finish the course. I have had one orthotics appt and go back to be fitted with an AFO next month. Itā€™s very reassuring to hear you talk of similar issues and to hear that the AFO has helped you. Fingers crossed it will help me too!

14

Until recently I used the foot up device, as I had foot drop. Found it worked amazingly well for me. Every few months I asked for a new velcro band, as the Velcro was worn out. Just phoned orthotics dept and they ordered one and posted it to me. My knee started hyper extending, so I recently had a mould taken of my foot and now wear a cast of my lower leg and foot inside my shoe. Has taken time to get used to this and it is rather cumbersome, but at least iā€™m not hyper extending my knee as much as I used too. The chap who attended to me at the orthotics department was super helpful and this made more more amenable at wanting to persevere with this device. Iā€™ve another appointment in 4 months time and if Iā€™m still hyper extending might have to wear a full cast on my left leg. Donā€™t fancy this. Presently I can only wear larger lace up trainers and always use one or two sticks. I guess we have to persevere and see what works for us. By comparison to many in the world we are fortunate to get so much help.

1 Like
15

I use Naboso insoles and I find them amazing because they improve my balance

16

I find the best results using a very lightweight shoe that is zero-drop (flat, no heal). The shoe brand I prefer is a small company called LEMS and I use these fitted with the OSSUR Foot-Up. I donā€™t like the braces that have a plate going into the bottom of the shoe,just feels too unnatural.