KAFO

Wibbles

What do you wear under your full length KAFO ?
According to what I read - Socks, Stockings or Tights ?

Plus - what shoes ?
I have been told "one size larger on the affected leg" ?
I have been advised "velcro strap" Training Shoes with removeable insole
But will the un-affected foot not be extremely loose fit in the other shoe ?

Tori_Scope

Hi @Wibbles  

I don't have any personal experience of KAFOs, but I'm wondering whether this blog post from Chloe on finding the right shoes for AFOs could be of help? 

Wheezy

Hi @Wibbles,

I currently wear an AFO, and have been fitted for a KAFO which I will be using in the next few weeks.

I was told that it was my choice of what to wear beneath it, but I'll probably go with tights (thicker ones, maybe 120 denier).

As for footwear, my current AFO fits fine inside a laced up shoe in my usual size. I tend to find that it's the width that's the issue, rather than the length. 

Wibbles

I'm male though

Tights ?

Wheezy

Wibbles said:

I'm male though

Tights ?

Fair enough 🤣 My orthotist said that as long as you have something between the brace and your skin. Some use a knee length sock for the lower part and a piece of tubigrip for the thigh part. That might work for you?

He also said that despite the advice, some people just don't follow the guidance. I wouldn't recommend that, though, especially if you'll be wearing it full time and/or have sensory issues.

Wibbles

Wheezy said:

Hi @Wibbles,

I currently wear an AFO, and have been fitted for a KAFO which I will be using in the next few weeks.

I was told that it was my choice of what to wear beneath it, but I'll probably go with tights (thicker ones, maybe 120 denier).

As for footwear, my current AFO fits fine inside a laced up shoe in my usual size. I tend to find that it's the width that's the issue, rather than the length. 

Thanks for the advice

I have been told to attend a "fitting clinic" with velcro training shoes with removable soles - one size larger than my regular size !

I may go for a single stocking rather than tights - when the weather is warmer - it will look odd with tights on and shorts !

Wibbles

I bought a new pair of trainers - at the weekend - a size larger than normal

Hopefully the foot plate of the KAFO will fit inside it

I still have no tights/stockings/socks and await a fitting tomorrow

Wibbles

I walked yesterday - relatively painlessly for the first time in 10 years! 

Alex_Alumni

That must be a great feeling @Wibbles I'm pleased to hear it was pain free

Wibbles

It was an incredible feeling - I'm never going to run a marathon - but at least I am not going to be stuck in a chair for the rest of my life !

Justcheckingin15

@Wibbles..Great to hear.👏

Wibbles

I bought some, over the knee TOE SOCKS to make wearing my knee brace more comfortable / embarrasing - at the moment, with no socks, I am getting rubbing and bleeding 

https://toesocks.co.uk/fashion/over-knee-stripy.html - under £10 a PAIR !

They are much cheaper than the usually recommended sensory smart store @ £22.95 EACH !

Wibbles

I am unable to put on the full length KAFO without any help so its basically redundant !

It took a good 5 years to even obtain it - so I don't want to appear ungrateful but it is unsuitable for me

Also - it is much too heavy and is destroying my left hip because of its awkwardness and cumbersomeness

Also - it kills my back when trying to use it.

I am going to have to ask for an alternative such as STANCE CONTROL https://www.buchanan-clinic.co.uk/blog/c_brace

These reportedly cost over £40k in 2016 but have dropped considerably since then

But will NHS fork out for this ?

This is going to outlive me !

Any advice please ?

Wibbles

The c-brace is £60,000 +
How ridiculous
I bet the NHS won't pay this much? 

Tori_Scope

Crikey, that's a lot of money @wibbles! 

Wibbles

Tori_Scope said:

Crikey, that's a lot of money @wibbles! 

Its a silly amount of money - I wonder how many have been paid for by NHS ?

poppy123456

Wibbles said:

The c-brace is £60,000 +
How ridiculous
I bet the NHS won't pay this much? 

Then I think your chances are slim to none.

Wibbles

poppy123456 said:

Wibbles said:

The c-brace is £60,000 +
How ridiculous
I bet the NHS won't pay this much? 

Then I think your chances are slim to none.

It's got to be worth trying though 
Nothing to lose 

Wibbles

Anyone following my issues may be interested to learn that on Tuesday - I made a visit to ORTHOTICS - Where I had a plastercast made of my left leg and accurate measurements were taken - for a private company to make me a replacement super strong/super lightweight - KAFO - made from carbon fibre.......... Ready in 2 months !!!

Alex_Alumni

Thanks for the update @Wibbles it sounds good that it'll be both strong and lightweight.

I remember getting my legs plaster cast as a teenager to see if that would help improve the positioning of my feet- and help me walk on my heels rather than my toes. I didn't enjoy when they cut them off, as I thought they'd saw through to my skin I was fine of course! 

Are you looking forward to their arrival?

Wibbles

Alex_Scope said:

Thanks for the update @Wibbles it sounds good that it'll be both strong and lightweight.

I remember getting my legs plaster cast as a teenager to see if that would help improve the positioning of my feet- and help me walk on my heels rather than my toes. I didn't enjoy when they cut them off, as I thought they'd saw through to my skin I was fine of course! 

Are you looking forward to their arrival?

Yes I am, with trepardation - I was told similar 12 months ago but it was a bit of a let down, what with the weight of the original one