kafo design

I got my first AFO ten years ago. A year before that I started tripping up. I had had radiotherapy six months earlier and have been told this was the likely cause of nerve damage.To begin with the AFO enabled me to  walk easily. A gradual deterioration followed. Then I got  a more rigid AFO, too painful to wear, then an AFOMax.

I got KAFO1 in 2014 and KAFO2 in 2016.. I have got problems with both of them and think I need a third to take account of changes! If you want to hear more just let me know. I will be interested in your history.

I have mentioned my 2 KAFO's, both of which I wear according to the shoes they fit and the activities of the day. Both KAFO's are calipers, KAFO1 fits round sockets, KAFO2  flat box sockets. KAFO1 is made of steel and plastic. KAFO2 is steel and leather. I will have more to say and hope that you have too.

Hi,

I am not sure what you mean by caliper. I also not sure of what you mean by socket or flatbox socket. Sorry. I'm sure I would know what your meaning is in different terms

I wear a KAFO because I have nerve damage following radiotherapy for prostate cancer, resulting in weakened muscles in my right thigh and hip. Please ask any more questions and I will do my best to answer.

I found talking to the man in the pub useful and reassuring because he had a demanding towards his orthotist.

He gave me confidence to work out my needs and speak up for myself. 

I missed out the word "attitude" in the phrase "a  demanding attitude towards his orthotist". When I was diagnosed with prostate cancer a number of options were given to me..I  took the advice that the radiotherapy was best for me. The treatment cured me. 

Later I needed the services of an orthotist and assumed that I was in a similar position. As time went on I found I had to be much more active in finding out what was best for me. I don't think the orthotist would just do whatever I tell him but he relies on me to weigh up the experience I have had in the last few years, the knowledge I have gained, and the tentative conclusions that I come to.

I would welcome your knowledge and experience if you are willing to share it.

 

I also had prostate cancer and, like you, chose radiation. I had nine weeks, five days a week, of Intensity Modulated Radiation Therapy (IMRT). That was thirteen years ago, and my latest PSA test was 0.31. 

I applaud your self-advocacy efforts.

A KAFO is a shortened term for Knee Ankle Foot Orthosis. Orthosis is the clinical term for a brace (United States) or caliper (United Kingdom). A KAFO is a long leg brace, and an AFO is a short leg brace. 

I had radiotherapy for prostate cancer. About six months later I started tripping up. The nerve damage has persisted. The visible effect is weakness of my thigh muscle but other muscles are probably affected. If I walk without a KAFO I put my hand on my thigh just above the knee to keep my leg straight. The KAFO does a much better job and leaves my hands free. In that respect it is better than crutches which I do use, e.g. at the gym.

I think AFO, KAFO etc. are either American terms or international. When I needed info on orthotics I found the AAOP was a good site - American Academy of Orthotists and Prosthetists. 

I replied to you without explaining that the nerve damage which weakened some of my leg muscles was probably caused by prostate brachytherapy, not surgery nor radiation from an external source. I had about thirty "seeds" implanted in my prostate in order to "zap" it. They have a fairly short half-life but are still in me. I doubt whether the surgical procedure would cause the effect you mention. But it is worth mentioning to your doctor.  I had a minor operation a couple of years ago to widen my urethra and the consultant assumed that the narrowing of the urethra was a result of the brachytherapy. My experience of prostate cancer is that early diagnosis saves lives.

The reply I have  just sent to Jack82755 was really meant for you! I hope it will do for both.of you.

Hello Laocoon, thanx for the explanation. I had no idea of that side-effect from Prostate cancer treatment. I feel I just had a lucky escape as I've just had the all clear from a Prostate biopsy!

I want to say that modern KAFO design is streets ahead from the old steel side members & stiff leather straps. The exterior heel sockets are long gone ( I have used standard shoes for decades now) and the aluminium side members with high precision knee joints make them surprisingly light. I have a cast taken of my whole leg from which they mould light plastic thigh & ankle sections. All this makes it fit like a glove and the ankle section slips under your foot inside your shoe, just like an AFO, which gives good stability.

I hope Marion02844 reads this as I would strongly encourage you to seek a referral to the Nuffield Orthopaedic Centre at Headington in Oxford. The Orthotics dept. there is brilliant and make all the devices on-site. No small adjustment is too much for them to make while you wait. My right leg is completely paralysed & wasted including my right hip but I walk ok with my KAFO. At one time I'm sure they would have said I was unsuitable for callipers too.. I have a very weak left leg but managed to give up the left leg KAFO when I was around 8 years old. (Had polio at 3 years old and I'm now 63.) I've always used crutches for distance or rough ground so I don't pretend I walk well and of late I've taken to my crutches more and my left leg gives up earlier than it used to but I put this down to the effects of ageing combined with nearly 60 years of walking as I do. I'm afraid I do not support the PPS theory as I cannot honestly say I have noticed a new wave of paralysis, just maybe too many McDonalds meals!!

I hope you fellow KAFO users found my experience helpful and strongly encourage you all to have a referral to a disability centre (at an NHS Trust such as the NOC at Oxford I mentioned above) rather than at a hospital where a private company holds a clinic in a cupboard every Wednesday!! Other NHS centres are at Birmingham & Dundee. There will be others.

Good luck to you all, Brian.

I have 2 KAFOs, both calipers. KAFO1  has round spurs and consists of  thermoplastic thigh-shell and lower-leg shell linked by two steel uprights with drop-lock hinges.  There is quite a lot of contact with parts of my leg that get sore. It is also uncomfortable in hot weather. KAFO2 is steel and leather. It has minimal contact with the front of my leg. It came with two detachable straps, above and below the knee, but I only use the one below the knee. 

AFO1 and AFO2 were thermoplastic. AFO1was useful until my leg deteriorated. AFO2 was thick and more rigid and proved too painful to wear. Then I saw an older orthotist who said that plastic AFOs were wrong for me and prescribed a metal and leather one with a T-strap for valgus ankle. When I tried it on my knee collapsed. That was when the senior orthotist agreed I should have a KAFO and had KAFO1 made. That is why I have calipers and will probably continue to.

Hello Brian

Thank you so much - Marion has read this and I will make a note of your comment regarding the Nuffield, would be worth the trip. (No pun intended!)  The Lane Fox at St. Thomas's has asked me to go to the Roehampton to see about a brace, so I will wait until I have seen them.  My osteopath pulled my pelvis back again today, I find it slips so often, but I have a good guy who helps a lot.

Great to read you can still wear normal shoes with Kafos - now I know that I really will give it a try, as walking is so difficult.

We don't get better do we....

Best wishes to all,

Marion x