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Post by rowland on Feb 17, 2020 17:30:43 GMT
I have got an appointment next week when I will get back a KAFO which has had an ischial ring added to it. I want this event to be a good experience. What problems might I encounter? What benefits can I expect?
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Post by castmenow on Feb 18, 2020 16:51:20 GMT
Rowland, I am not sure you will get much response to this, most of us on here are not medical brace users and do not have experience of attending appointments, some of us have done as we have got braces made by professional orthotists but it is quite different. The only things I can think of are that with the ischial ring you need to make sure that it is sitting in just the right spot to give some weight relief and that it is comfortable and sits in the right places and does not press against nerves or blood vessels. I am sure that the orthotist is experienced in all of these issues. I hope that everything is OK for you at the appointment and let us know how it goes.
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Post by rowland on Feb 18, 2020 17:59:46 GMT
Yes, but there are two main types of ischial ring: the simplest, a complete metal ring, padded and covered with leather: or a semi-circle open at the front with a strap across the gap. Is there anyone who has tried both? Or anyone who has tried one and thinks they would like the other? Any contribution regarding preferences, satisfaction or dissatisfaction? I count myself lucky to get orthoses free via the NHS. One professional phoned a firm that makes KAFOs I gave her permission to do so because the initial consultation was cheap. As it happened the contact she wanted was out of his office. So I was spared from "going private." I have tried conventional health forums and have found them less helpful than VB. I feel I am in the right company!
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Post by rowland on Feb 18, 2020 18:29:18 GMT
More to say: I have found posts on Knee Pads helpful. I appreciate my orthotist's reluctance to provide me with one. A couple of years ago I got a KAFO with one attached but it was too small for me to use. It was attached to the outside upright. I took the KAFO back and had it cut off. I took it in to my last appointment and asked if I could have one that fitted and was removable. I wanted to try it to see if would help my valgus knee. I also asked for a T-strap on my boot to support my ankle. I have got neither so far. I will see if the ischial ring takes the strain off both joints. In any case it is good for me to have to think clearly about KAFOs etc. It gives me courage to speak up for myself.
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Post by rowland on Feb 26, 2020 18:37:59 GMT
This morning I got my KAFO that has had an ischial ring added. I wore it until I got back from being out this afternoon. As soon as I put it on I felt it was longer but I still had good contact with the ground through my boot. I felt it would take pressure off my knee, which was a major reason for asking for it.
Unfortunately when I got home I realized that a strap holding the closure across the front of the thigh had come loose. The stitching had failed. In any case the ring was pressing against the top of my femur just where the ring is joined to the lateral/outside upright. Tomorrow I will take it back with a suggestion that I should have a complete metal ring instead of a rear semi-circle with flexible front closure.
Eventually we will get it more or less right!
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Post by castmenow on Feb 27, 2020 7:18:15 GMT
So close, it must have been frustrating when you found it had broken in the first few hours. Hopefully just a substandard bit of stitching or leather and it can be repaired. I agree though that a full ring would eliminate the issue, but it must be a lot hard to put it on and off with a full ring.
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Post by rowland on Feb 27, 2020 18:14:11 GMT
Thanks, castmenow. I have only had velcro closures. I hate the noise that velcro makes; so I only open and close the velcro strap below the knee. I hardly ever open other velcro straps. Therefore I am used to putting my leg in at the top of the KAFO foot first.
I look forward to getting the KAFO back and getting used to the ischial ring. There is always the chance of getting the perfect leg-brace in the future.
Always lots to learn. Happy leg-bracing!
Rowland
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rmar
New Member
Posts: 23
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Post by rmar on Feb 29, 2020 15:39:37 GMT
I will add my 2 cents for whatever they are worth ! I am like castmenow - not a medical need brace used. Over the years most of my braces have had the ischial ring - I requested them because I liked the look. When the "ring" is fitted correctly you will sit on it without anything hurting and that should take all of the weight off of that side of your body. I also had the problem of the stitching coming loose where the strap attached to the leather covering the ring. So for my current pair of braces I requested that they attach the straps to the rings themselves before the leather is put on - the HKAFO is now going on 10 years and the straps have not come loose.
Good luck with your fitting.
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rk52
Junior Member
Posts: 79
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Post by rk52 on Mar 1, 2020 0:19:10 GMT
I would have expected the strap to be attached to the metalwork of the ring to be honest, I’m surprised that it wasn’t. I would also be concerned that the rings, especially those with a complete metal ring, might interfere a bit with the male anatomy? I like the idea of ischial rings but that does concern me!
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rmar
New Member
Posts: 23
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Post by rmar on Mar 1, 2020 15:04:39 GMT
The rings on my HKAFO's do not interfere at all. If they are fitted correctly they are not really touching anything in that area and, since the leather should be a very soft kind, even if they did touch I don't think it would be harmful. Just my opinion !!
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rk52
Junior Member
Posts: 79
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Post by rk52 on Mar 1, 2020 22:09:10 GMT
I was thinking more of the “ring top” callipers which have a padded ring and no strap I suppose, it’s only recently that I found out about the half rings with the strap closures. I guess if the strap is thin it should be ok. I’d like to try one or two anyway. Thanks for your help!
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Post by rowland on Mar 3, 2020 18:01:32 GMT
Thanks for continuing this conversation. The brace in question has gone back for repair. When I get it back I will use it for some weeks providing it is comfortable. From previous experience I will eventually get the chance to make suggestions re design. I welcome any input to the slow process of getting a KAFO that meets my needs and my preferences.
My personal experience is about ten years long but I have gone from plastic AFO to metal and leather KAFO in that time. I have a lot to say and am ready to learn. Keep on posting. Rowland
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rk52
Junior Member
Posts: 79
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Post by rk52 on Mar 3, 2020 18:21:12 GMT
Let's hope you get the repair done quickly and the result is successful!
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Post by rowland on Mar 25, 2020 20:46:28 GMT
Thanks rmar,
When I see the orthotist a fortnight today I will ask for a complete metal ring covered with padded leather. The one I got back on Monday, one of my KAFOs with ischial ring added, is pressing painfully on the top of the thigh bone where the metal rear semi-circle ends and the buckle for the front strap is attached. On KAFO's I never undo the top strap; I just put my leg through from the top- no trouble. Also I like to copy other wearers who conform to the details of my self-image. The wearer who hailed me across a pub bar a few years ago and greeted me as a soul-mate, saying he had never met a fellow leg-bracer, had an ischial ring that was a full circle and he was happy with it. The way he talked about his brace and his expectation that the orthotist should provide what he, the wearer, wanted, gave me the confidence to be forthright in my discussions with the orthotist: he is the expert in designing the brace; I am the expert in wearing it. Another time I have more to say on need and desire.
Would like to hear a lot about your ischial rings. This is my first. I have a lot to learn. One topic is underwear: I have never worn boxers but when I tried the KAFO on naked it was clear that gravity should keep the scrotum clear of the ring, not supportive briefs!
Rowland
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Post by rowland on Apr 1, 2020 16:42:29 GMT
rmar, Thanks for your useful comments. Have you had an ischial ring that is a complete metal circle with padding covered with leather? This what I expected. Years ago I tried on a Thomas splint which a relative had worn for a broken thigh. I enjoyed it. Just a few years ago the man in the pub who hailed me as a long lost friend had a KAFO with an ischial ring that was a complete circle. So that is what my imagination and experience had prepared me for. My appointment has been cancelled and I have been told an orthotist will phone. Although I get on with orthotist, I hope it will be a different one. I need to present my requirements more deliberately. The man in the pub was forthright , having worn a KAFO since childhood. His advice was, "You're the one who has to wear it."
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