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AFO advice please!

Wildflowers47Wildflowers47 Posts: 7Member Listener
Hi!
My husband is a 3 year survivor of a severe hemorrhagic stroke. He suffers from right sided  weakness and drop foot with supination. This greatly affects his ability to walk and balance but with determination, physio he has made much progress. For the last 6 months he has suffered from what seemed like post stroke spasticity making his leg painful and jerky and limiting his ability to wear his custom AFO. Without the AFO though he cannot walk or transfer.
Through sheer doggedness we finally managed to get a podiatry appointment on the NHS where it was discovered that his AFO was causing pressure and blood blisters under his foot and this was the cause of the problems. The podiatrist has been treating the hole in his foot but advised an appointment at the orthotics clinic as soon as possible.

Before our appointment at Orthotics today I did lots of research on AFO’ s and it seemed like carbon fibre  AFO’s are much better than thermoplastic for avoiding pressure damage and also allow the calf muscle to fire, thus giving a chance of regeneration and improvement in walking balance and gait. I am a retired nurse so was able to look at in depth medical articles as well as real life users experiences However, the Orthotics Practitioner completely dismissed the idea of a carbon fibre and said that they were originally designed for soldiers, very unyielding and a waste of money. Rendering in fact, all the information I had garnered as irrelevant at best!
My husband’s current AFO had to be left for padding and strap adjustment and he came home in last year’s AFO which I had the foresight to take.

So, has anyone got any advice, experience or suggestions? The plastic AFO is going to continue to exert pressure and cause pain and blood blisters, but I don’t know what to do next to avert this. We have another Podiatry appointment where I will discuss this too.


Replies

  • Antonia_ScopeAntonia_Scope Posts: 1,783Member Pioneering
    Hi @Wildflowers47 thank you for sharing this with us. I am sorry to hear this. I think it is best to speak with a medical professional at the next Podiatry appointment and see what they say. 

    Some of our members may have had this experience and will be able to share this with you. 

    I am tagging @Jean_OT our Occupational Therapist to see if she has any suggestions.

    Best wishes, :)
  • Wildflowers47Wildflowers47 Posts: 7Member Listener
    Thanks Antonia,
    I want to give my lovely husband the best chance possible
    to retain all the gains he has made. I feel if he looses the ability to walk more than the few steps he can now we are looking at a bleaker situation than we had at this time last year where he was walking 20-25 meters with a tripod stick.
    I would be pleased to hear any suggestions Jean has to offer.
    Many Thanks,
    Chris :)
  • Antonia_ScopeAntonia_Scope Posts: 1,783Member Pioneering
    Hi @Wildflowers47 I understand, I hope it all goes well and please keep us updated. :)
  • Antonia_ScopeAntonia_Scope Posts: 1,783Member Pioneering
    Hi @Wildflowers47 How are you and how's your husband doing?
  • Wildflowers47Wildflowers47 Posts: 7Member Listener
    Hi Antonia,
    We are good thank you. We still have to see the Orthotics department . I emailed the Orthotics practitioner, thanking him very much for all his work so far with my husband’s mobility problems  ;)
    I asked if, on our next visit we might consider the possibility of changing the current brace which had caused such problems. I can only see what he says!
    I will report any developments. :)
  • CojoCojo Posts: 6Member Listener
    Hi, 

    Nowadays I wear a KAFO. Earlier on I had a series of  four AFO's:

    AFO1 was a thermoplastic bracket shaped from a plaster cast of my lower leg. I had it to stop me tripping up. It fitted inside footwear and had a velcro fastening across the shin. Although it was moulded to the shape of my foot it did not stop my foot pronating. To begin with it enabled me to walk freely and enjoyably.


    AFO2 was made of heavier plastic and extended further up my lower leg.
    I needed it because I had begun to trip up again. It was painful to wear because it was so rigid.

    AFO3 was made of carbon fibre. It had a flat sole plate, a bar across the top of my foot which extended vertically into a shell over most of my shin, and a fastening at the back across the calf. It seemed useful and comfortable at first but made my shin and instep sore. In its favour it allowed me to wear an orthotic insole. After a while I started tripping up again.

    AFO4 was a metal and leather caliper which fitted into sockets on the heel of my boot. It allowed for the wearing of an orthotic insole. The metal uprights were held by a half-band of metal covered with leather held in place by a velcro strap across the shin. Apart from this band and strap there was no contact between the  orthosis and the surfaces of the foot and leg. The contact was between boot and foot with the options of socks and insoles. In addition there was a T-strap attached to the side of the boot fastening around the ankle to prevent pronation. (This can also be used on the other side for supination.)

    Although I had high hopes of this solution, and so had the orthotist, this AFO made my knee collapse, at which point the orthotist decided I needed a full-length KAFO, which is what I wear satisfactorily now.


    I have posted elsewhere a request for the experience of anyone who wears a Stance Control Orthosis, as that is what my orthotist is now proposing.
    Sorry for the length of this account but it's the details that matter.
  • April2018momApril2018mom Posts: 2,084Member - under moderation Disability Gamechanger
    How was the appointment @Wildflowers47?
  • Wildflowers47Wildflowers47 Posts: 7Member Listener
    Hello to Cojo, what a trial you have had with your devices! It seems as if it’s a never ending quest to get the right help and each stage takes so long. It can be quite dispiriting and you understand why some just give up trying to be mobile. The pain and frustration is very wearing! I hope the latest suggestion from Orthotics help you.

    Our Orthotics appointment went better this time, although again, nothing much new is being prescribed.After my two emails to the department the Orthotics man seemed more engaged with us this time!  A scan was taken again, (there have been scans and casts), and we now have the long wait for the new brace. We will see how my husband fares with it and update the community.
  • CojoCojo Posts: 6Member Listener
    I was not complaining. I have received very good service from the NHS,
    including the local orthotics clinic.
    I think AFO4 - the metal and leather caliper - allows pressure to be diffused via the footwear. The orthosis is not in direct contact with the foot, only with the calf and shin at a higher level. This approach gives   free rein to a podiatrist to provide a comfortable and supportive insole.
    It might just be worth pursuing. Your husband might require custom-made boots. Look for pictures on line.

    Best wishes, 

    Cojo
  • Wildflowers47Wildflowers47 Posts: 7Member Listener
    I realise you were not complaining! I am a retired NHS nurse and I have both given and received good care from the NHS myself.
    Still it is frustrating and time consuming finding solutions.
    Thank you so much for your suggestions. I think since my husband’s leg problems are  caused by a neurological deficit through a CVA stroke rather than trauma paralysis, a KAFO wouldn’t be suitable.  I’m not sure that it would address the drop foot and the supination I’ll certainly ask at the next  Orthotics appointment. I will look at the boots you mentioned. Finding footwear to accommodate a fully enclosed AFO around the foot and calf  is certainly a challenge!
    Take care, and thank you!
  • CojoCojo Posts: 6Member Listener
    If you search for Stellenbosch Orthotics you should find their orthotics primer. Under "Lower Limb" you soon come to a list of three types of below-knee orthoses. The first one is the metal and leather one which fits outside a shoe. Spasticity is mentioned. The orthosis would allow for flexible use of insoles and dressings as it is not moulded to fit the foot.
    It might be worth bearing in mind for the future.
    Best wishes,
    Cojo
  • Chloe_ScopeChloe_Scope Posts: 4,668Administrator Scope community team
    Hi @Wildflowers47 and thank you for keeping us updated on this! I hope you are not waiting too much longer for the new brace. I have worn AFO splints on and off my whole life so if you need any help with shoes or anything else then please do let me know :)
    Chloe
    Online Community Officer
  • Wildflowers47Wildflowers47 Posts: 7Member Listener
    Thank you Cojo and Chloe for your support. I appreciate your suggestions and leads to new sites.
    Chloe, if you know of any good UK sites on line to look at men’s footwear, that would be great! 👏🏻👏🏻
  • Chloe_ScopeChloe_Scope Posts: 4,668Administrator Scope community team
    Hi @Wildflowers47, no problem at all! I terms of shoes, the style of shoe can help a lot. Trainers are always the easiest and if you take out the insole of the shoe it will give you more room. I tend to go 1 or 2 sizes bigger when buying shoes which allows room for the splint. I hope this helps :)
    Chloe
    Online Community Officer
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