Anyone suffer problems with AFO's

[cath123]

I AFO's on both legs and currently they are causing me more pain than help. Firstly i was suffering with rubbing at the ankle bone, this was in addition to the severe burning on either side of the ball of the foot, this becomes so excruciating that it brings me to tears and totally immobilises me. My feet are swollen and bright red, and takes up to an hour to return to normal.

I had new AFO’s made, straps were on the wrong side, so were sent back, and these new ones have been worse than the old ones. Not only do I continue to have these pressure burning pain, but now the cast cuts in leaving blood blisters. Back to being reviewed and start the whole process again as the AFO’s have now been declared too narrow!!!

Without the AFO’s I struggle to walk, so will have to endure the pain until they get it sorted.

How often should AFO’s be reviewed?)

[cleo9]

Hi I haVe had various ankle supports , which I wear on both feet I had problems till I got safo s they are made to measure and are brilliant, but I know not many NHS trusts will pay for them, but they are brilliant !

[ValFC]

I have never gone down the AFO route, but do have SAFOs made to measure some ten years ago by Dorset Orthopaedic (and yes, I did have to pay for them privately). They certainly work well in terms of support, but with two major drawbacks: firstly, the silicon makes your legs sweaty and if worn for more than a couple of hours can produce a burning sensation, even leading eventually to contact dermatitis; and secondly, the claim that they fit inside your ordinary shoes is simply not true – if you can't bend your ankles, getting them inside even a pair of shoes a size larger than normal doesn't work. I mostly wear my SAFOs round the house to lessen fatigue, with tights underneath them + Velcro-fastening sandals on top. Wearing them to go out is more of risk because of the above-mentioned problems; if the burning sensation starts you need to get them off quickly, and when you have weak hands too this is difficult.

[John1945]

Hello Cath123....

Due to having inherited C.m.t. Type 1a I have had to wear Ankle Foot Orthosis (AFO's) since 2004: Yes in the early days it to took a while to have them adjusted/trimmed to support my lower limbs muscle wastage, and "foot-drop" : After persevering we got it right ! I now order my ordinary shoes/trainers one size larger, and request an 'extra-wide fitting:

My local Lanarkshire Health Board uses the 1st class company - Buchanan Orthotics (Glasgow) to manufacture them: They contain both internal, and external padding at the ankle joint, and have two velcro fixing straps: The Surgical Appliance Department's orthosist takes casts of each lower leg, therefore making them 'made-to measure' for each individual patient:

I simply could not be without them: It provides me with support/balance/strength to do my daily walk 3/5k's to assist with my exercise routine:

Keep persevering ! DO NOT LET CMT WIN ! ! ! SHOW IT WHO IS THE BOSS ! ! !

John....

p.s.

Also check the internet as many different companies specialise in supplying AFO's

[danny1976 in reply to John1945]

Hi Im in Strathaven Lanarkshire I have AFO's and they are killing me running about at work standing and getting up and down off the floor can I see a picture of yours cause mine arnt padded

[John1945]

Cath123....

I forgot to mention that I buy Asda's ladies "knee-high" stockings to wear both internally, to prevent chaffing/sweating etc, and also externally cover the usually white orthotic device: I am also on an annual review, and my old AFO's were sent away for refurbishment, and returned to me as a spares:

[ValFC]

Just a PS to my previous posting – I remain convinced that the answer to many CMT problems (especially for women) is not a separate appliance, but a well-made, neatly-fitting high ankle or full-length boot, available in both winter and summer colours. The summer ones could even be made with the leg part in some sort of strong mesh for coolness. I used to have a wonderful leather pair which looked elegant and gave perfect support, but because they were only 'fashion boots' could never get them again once they'd worn out. Sadly, no manufacturers seem to be up for it...

[claire_marsden1]

i have AFOs on both legs when i first got them they give me a load of pain in the heals then i developed a callus on the bottom side of my feet. so went back and they re padded them which took a load of pain away instantly, i also had problems with them swelling and they gave me some medie stockings to stop the swelling so maybe ask for them .

[Hidden]

Hi Cath123

I was prescribed Ritchie Braces a few years ago which from a comfort factor where excellent.

The one downside was that due to bad walking habits developed over the first 40 years of my life, the readjusted walking position triggered patellar tendonitis which we tried treating with various treatments such as shockwave, physio and even high volume saline injections.

All worked but the injury kept coming back due to the way the AFO's made me walk.

Moved on to SAFO's and they are fantastic. The walk is so more natural and no side effects on the knees. Unfortunately the feedback from VALFC is spot on re the dermatitis. Depending on length of wearing I do get some serious spots on the feet which need to be smothered in E45 to get the skin back to normal. But for me the quality of life increase of wearing them made me decide to live with that.

Looks like we all have lots of trial and errors with our (S)AFO's ... just keep on trying.

[Hidden in reply to Hidden]

One thing - re the shoes, I guess that is a personal experience as I have been able to start wearing lots of shoes that I put aside due to the bulk of the Ritchie Brace hinges. The SAFO these days are really thin so for me they fit in all my shoes.