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Does anyone have Carbon Fibre Orthotics?

NoahNoah Member Posts: 430 Pioneering
edited July 2014 in Cerebral Palsy
I’m currently working on a project to try and get my hinged AFO’s made out of Carbon Fibre, been holding discussions with the Exeter Mobility Centre and Crispins Orthotics in Leeds.
Really so excited about it, as my plastic AFO’s have made such a huge difference in my life and I believe that Carbon Fibre is the future of Orthotics. I’ve been told that they can make carbon Fibre AFO’s with more ventilation, as anyone knows that has to wear them, knows, just how hot and sticky, your legs can get! Also rather than supress the calf muscles, carbon fibre AFO’s can be designed to allow the calf muscles to fire and hopefully regenerate!
Interested in anyone’s experiences?
Thanks for reading
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Replies

  • abstractLucasabstractLucas Member Posts: 79 Connected
    I have no useful info, but wanted to say it sounds like a great idea - Smiler (12) has worked his way through each type of splint, they would correct one issue but another would develop, so new ones sorted, and six months later another new issue! The hot sticky legs and feet thing is a real problem for Smiler too - he hasn't yet hit puberty, but I'm thinking when he does and his feet suddenly smelling as his (younger) brothers did at this point, it's going to get so much worse!
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  • Blue FrogBlue Frog Member Posts: 373 Pioneering
    edited July 2014
    Hi Noah, sorry for hi-jacking your thread! Really interesting to hear from someone who wears AFO's, some of the kids I look after have them and I often wonder what they think of them, as unfortunately they can't always explain. I guess it's different for everyone, but what advice do people who wear them have for us carers? e.g. Do long socks underneath help make them comfier or just hotter, which is worst accidentally making them too tight or them rubbing?
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  • NoahNoah Member Posts: 430 Pioneering
    Hey Kathy, thanks for your reply, I have started a new discussion to talk specifically about AFO's. Happy to answer any of your questions on there. :-)
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  • NoahNoah Member Posts: 430 Pioneering
    Hi Abstract Lucs, Thanks for your input, yes I remember those days well.......tried out every possible type of orthotic when I was that age!!!! One suggestion I would make is, ask for a Gait analysis, it helps to tract progress and try and understand the biomechanics better. What type of issues is he getting? Are they related to him still growing?
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  • NoahNoah Member Posts: 430 Pioneering
    I thought I would just post a link to the company I'm in discussions with about possibly making me some carbon Fibre AFO's.

    Click - http://www.crispinorthotics.com/carbon-fibre-orthotics-2/carbon-fibre-orthotics-2/

    Hope some of you also find it useful. Feel free to make any comments or suggestions.
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  • NoahNoah Member Posts: 430 Pioneering
    I'm still trying to get my AFO's made out of carbon Fibre.....Just wondered if anyone else has managed to get carbon Fibre Orthotics?
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  • NoahNoah Member Posts: 430 Pioneering
    Exeter Mobility Centre now have a brand new, very impressive display in the main reception of all the different types of Orthotics. The display includes pictures of Carbon Fibre AFO's! I would be so interested to hear from anyone who has carbon Fibre AFO's. Please share your story :-)
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  • NoahNoah Member Posts: 430 Pioneering
    Got my appointment through today for what will be hopefully the last fitting for my plastic AFO's...........next step will hopefully be carbon Fibre.

    If you currently wear plastic AFO's it is well worth seeing if you can have a look at a carbon Fibre AFO. Pay particular attention to the weight difference, and then just push the foot plate with your hand and notice the spring like properties that carbon has.

    I have a friend who about a year ago switched to carbon Fibre and it has made an incredible difference to his gait, and he doesn't get as tired now because it is lighter and easier to use than his plastic AFO's. It is also easier for him to fit his shoes over the top due to it not being a bulky.
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  • NoahNoah Member Posts: 430 Pioneering
    Hi everyone,

    I got an appointment through this today, to have another fitting for plastic AFO's. lets hope they fit this time! It seems to take so long to get anything made under the NHS - At least 3 months each time.  I'm seriously considering going private and just getting Carbon Fibre AFO's made in Leeds by Crispin orthotics as they have said they can have it all done in 3 weeks.

    If anyone has any experience of an NHS hospital supplying Carbon Fibre AFO's I would be very interested to hear your story.

    Thanks for reading.

    Noah
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  • Gary681Gary681 Member Posts: 3 Listener
    Hi Noah

    Do you have any update on your CF AFOs? My daughter is reliant on silicon AFO to maintain her mobility. Although she manages very well in them I am always on the lookout for improvements - carbon fibre looks promising. I doubt the NHS would fund these for her - do you have any info on roughly how much it would cost to get a pair manufactured and fitted?
    Thanks in advance

    Gary
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  • NoahNoah Member Posts: 430 Pioneering
    The cost of carbon fibre afo's depends very much on the type of afo required. For mine which have te be casted to my feet and hinged it is about £500 per foot from crispen orthotics. Some hospitals are already supplying carbon fibre, I'm hopefully of being the first person to get carbon fibre at Exeter or another option which I've not ruled out is to get referred to a hospital that is already supplying carbon fibre. If I lived nearer to leads I think I would have already gone private. As a little tired waiting! It's exciting, the possible technology that will hopefully help many of us achieve more. Please let me know how you get on. Noah :)
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  • Gary681Gary681 Member Posts: 3 Listener
    thanks Noah,
    we are moving down to Worcestershire from Scotland in the next month or so and will be looking in to this when we are settled. Will keep you updated.
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  • NoahNoah Member Posts: 430 Pioneering
    Your welcome - hope your move goes well, yes please keep me updated. :)
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  • Liz10Liz10 Member Posts: 4 Listener
    edited February 2018
    Hi Noah

    It's a few years since your last post, so I hope this might still be of interest. I have just joined. I have carbon fibre AFO's, which finally seem to be helping with my foot drop, due to Peripheral Neuropathy. There were a lot of teething problems. I live near Exeter, and managed to find a private orthotist who has a clinic in Street, Somerset. I was wondering if you knew of any good private orthotists near Exeter? I have found that once they have received payment, they tend to lose interest in whether the orthotics are effective or comfortable.
    I hope all is well with you
    Many thanks for your help.
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