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when "good" legs go bad

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I'm right below-knee limb deficient (ie. I was born without my lower right leg, I didn't have an amputation). After years of putting more strain on my left knee, including hopping around on one leg too much when I was a child, I've developed arthritis in my left knee. My patella isn't aligned properly, so it sits to the outside of where it should be, and there is no cartilage remaining under the patella. And now I've learned that the cartilage on the main weightbearing surfaces of my knee is wearing out. It hurts, especially when I walk on uneven ground or up and down stairs and hills.

I'm not old enough for a knee replacement, since I'd wear it out and need a replacement sooner rather than later. Today I had an injection of cortisone & local anaesthetic, so it's feeling great again, but clearly it won't last. My doctor is willing to repeat the injection when needed, for example, before I go on holidays, etc.

So, I offer this as a warning: don't do what I did! Especially, if you are young and plan to live a long life, or if you have a child with limb deficiency - don't let them hop around on one leg. For me, the damage is done, but please don't do what I did!

If there's anyone else in this position, I'm interested in hearing how you cope. I'm not used to being disabled - my "normal" life is just that, pretty normal (husband, two kids, full-time employment - no time to be lazing around feeling sorry for myself). But I think I need to take a bit of time to think about how to cope with it, your suggestions are welcome.

Kate

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Hi Kate,

I was told not to hop from the very beginning. It is hard not to do some hopping, but I keep it to a minimum. I had some issues with what is now my good knee before I became an amp. I need to take care of it.

I have some friends who have had what is commonly called the 'rooster's comb' injections with great results. It is a series of three injections under the kneecap. The injection is a fluid that becomes a gel, but doesn't harden. It remains in a gel consistency for an indefinite period of time. The fluid is a component of the comb on a rooster's head. My neighbor was staring at knee replacement surgery when his age was right, but he doesn't even notice the pain after the injections. He had this done a few years ago and it is now wearing off. He is now at an age (67)where the docs will consider the joint replacement.

I don't know what the docs actually call this. I'm sure a quick google search should find the answer. I hope you get some relief.

Neal

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Have been in a similar position to you Kate, I am bilateral b/k but also fairly young when I became an amputee too and have always been pretty active, didn't consider myself really disabled ... but as the years go by think that the extra stresses and strains creep up on us a bit quicker than is the norm.

For me as the years went by, getting a prosthesis made became difficult,one of the stumps is grafted, and consequently my mobility reduced and all manner of aches and pains which never seemed to get addressed, my life up until then had been a bit like you describe yours, (husband, children, work etc) I felt my life was pretty normal, and it did take me a while to get my head around it all. Imagine I am somewhat older than you, as my children have already flown the nest, but I am kind of adapting, a couple of years back I had a revision amp and discovered exercises once again, which I hadn't really done much of since my initial surgery forty years earlier. Fortunately the revision was quite successful and getting a prosthesis made now is much easier, but for me, found exercise the real key to helping with the problems I was having with my joints, I never imagined I would be exercising and going to the gym as much as I have done in the last couple of years, and enjoying it so much.

So I am still hanging in there, still walking, though taking lots more care of my legs than I probably did years ago, probably balancing things out more and making my home more accessible for when I am not wearing the legs, slightly different for me as am bilateral, but I do mix & match with the wheelchair which these days I see more as an enabler.

Am sure you'll find a way too. Do hope that the knee works out ok.

Ann

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Hi Neal,

Sounds like you're referring to hyaluronan, generic name Hylan, one brand name is "SynVisc". It's more expensive than cortisone. As a vegetarian (considering giving up cheese as well to help me avoid potential obesity due to lack of activity, due to this knee), I'm not too comfortable injecting bits of roosters into my body. We are trialling cortisone first. My orthopaedic specialist hasn't suggested anything else yet - the cortisone injection was painless and so far it has worked ok. There are no reliable longterm studies comparing hyaluronan, cortisone and saline (placebo) as yet. My knee is a lot less swollen today than it was yesterday.

I'm not yet 50, so I have a while to go until I am eligible for a knee replacement. My father had his done at 76 years old, we are a long-lived family in general.

Kate

Hi Kate,

I was told not to hop from the very beginning. It is hard not to do some hopping, but I keep it to a minimum. I had some issues with what is now my good knee before I became an amp. I need to take care of it.

I have some friends who have had what is commonly called the 'rooster's comb' injections with great results. It is a series of three injections under the kneecap. The injection is a fluid that becomes a gel, but doesn't harden. It remains in a gel consistency for an indefinite period of time. The fluid is a component of the comb on a rooster's head. My neighbor was staring at knee replacement surgery when his age was right, but he doesn't even notice the pain after the injections. He had this done a few years ago and it is now wearing off. He is now at an age (67)where the docs will consider the joint replacement.

I don't know what the docs actually call this. I'm sure a quick google search should find the answer. I hope you get some relief.

Neal

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Thanks Ann,

Yes, it's pretty frustrating. I tried hydrotherapy for a month earlier this year, trying to strengthen my left knee but only ended up aggravating it further (though it could have been the land-based physiotherary I was prescribed at the same time). A rehab hospital is not a place I've ever spent time in, so it was a bit confronting. I tend to be in and out pretty quickly when getting a prosthesis made at APC, so I'm familiar with the walking rails etc, but it's just not part of my self-image. I have to keep reminding myself that it doesn't change who I am, it is just something I am doing for a result.

I'm seeing an exercise physiologist later this week and am hoping she can suggest some activities I can do at a gym again. I try to swim once or twice a week. I'm finding motivation difficult due to knee pain, and my job is fairly sedentary so I can just work and ignore the leg (oh so tempting). I tried a gym 2 years ago but dropped it because the personal trainer had no idea how to help someone my age with arthritis (she had me doing leg presses with heavier and heavier weights, when I would have been better off with more reps on a lighter weight). The gym meant I ended up needing arthroscopic surgery on my left knee a year ago.

I'm going to get my prosthesis reviewed at a clinic next week and perhaps get a new one prescribed, to make sure it's the best it can be. It's been 6 years I think since I was last at the clinic.

As long as my right leg hangs in there I'll use crutches with the prosthesis when my left knee isn't happy. I'm worried about what my husband and kids would think if I needed to use a wheelchair. When walking distances on rough ground, I use one or two hiking / trekking poles, which help. If it's good enough for perfectly able-bodied Europeans, it's good enough for me (bushwalkers / hikers in Australia don't tend to use trekking poles, we mostly see tourists with them).

Kate

Have been in a similar position to you Kate, I am bilateral b/k but also fairly young when I became an amputee too and have always been pretty active, didn't consider myself really disabled ... but as the years go by think that the extra stresses and strains creep up on us a bit quicker than is the norm.

Ann

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Kate, this is such a good point to bring up. I have been an amputee since 1971. I was 17 years old at the time. I needed surgery on my (good very important left knee) in 2004. After the out patient surgery, they gave me some crutches and said to take it easy for 2 days. I went to take my first step with my prosthesis as my main leg (something very new) and I couldn’t move at first? I slowly adapted but I felt like a sailboat bobbing up and down on the water with no wind to move me. (Take care of your good limb, the hip, the knee, ankle and foot, even your lower back. This is extremely important for obvious reasons. It is truly a natural human condition to take things for granted and in this case, it’s very bad for us.) To help you cope with your new situation I recommend you read a book or too from Heathers list under the help tab, just scroll down the page. Just remember things could always be worse, be thankful for what you have, and always focus on all that you still can do and not on what you can’t! Make sure you are going to the absolute best doctor you can find. There are injections of other types that helped me with pain for considerable long periods of time before I eventually had surgery, different than what your getting. The injections put an oil like substance in the joint offering more protection in the knee joint itself, simulating natural cartilage. I highly recommend becoming a very thin lady if you aren’t one already. This will help you greatly! Losing 35 pounds and getting cartilage corrective surgery have kept me pain free. Keeping thin is very important! I hope you have a good outcome with good medical care. I believe things always have a way of working out! Stay strong Kate. Respectfully, your friend, Kevin.

I'm right below-knee limb deficient (ie. I was born without my lower right leg, I didn't have an amputation). After years of putting more strain on my left knee, including hopping around on one leg too much when I was a child, I've developed arthritis in my left knee. My patella isn't aligned properly, so it sits to the outside of where it should be, and there is no cartilage remaining under the patella. And now I've learned that the cartilage on the main weightbearing surfaces of my knee is wearing out. It hurts, especially when I walk on uneven ground or up and down stairs and hills.

I'm not old enough for a knee replacement, since I'd wear it out and need a replacement sooner rather than later. Today I had an injection of cortisone & local anaesthetic, so it's feeling great again, but clearly it won't last. My doctor is willing to repeat the injection when needed, for example, before I go on holidays, etc.

So, I offer this as a warning: don't do what I did! Especially, if you are young and plan to live a long life, or if you have a child with limb deficiency - don't let them hop around on one leg. For me, the damage is done, but please don't do what I did!

If there's anyone else in this position, I'm interested in hearing how you cope. I'm not used to being disabled - my "normal" life is just that, pretty normal (husband, two kids, full-time employment - no time to be lazing around feeling sorry for myself). But I think I need to take a bit of time to think about how to cope with it, your suggestions are welcome.

Kate

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Sounds like you are doing everything you can, Kate, so hope it all works out for you.

Like you I have found it hard to get trainers, physio's etc who understand what I need and how different exercises or gym effect my legs, at the gym I tend to do more upper body stuff than leg work, not because I can't do the leg work but because I am cautious of the stresses on the stumps and the knees, the leg exercises I tend to do are at home, bit more gentle and based around, stretching, core stability etc. I also initially found hydrotherapy seemed to cause me more aches and pains,especially the day after a session, and I was never really sure how much good it was doing me, but this did lessen as the months went by and I found the warm water very relaxing.

Using a wheelchair, & initially just having one in the house was difficult for me too, and I think probably also for the family, what helped me was getting the most manoeuvrable and snaziest looking one I could afford, and to begin with it sat behind the desk, but my youngest loved it and used to tear around in it so that kind of broke the ice. Its been a bit of journey and we are now about eight years on, I also have treking poles, and crutches, I keep in the boot of the car, and the wheelchair, like the prostheses is just another part of my kit really, to use when I need to, and actually helps keep me mobile, if that makes sense.

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Kevin, I agree it's a really important issue that Kate's raised, because I don't think there's much doubt that walking on prosthetics from an early age, does put stresses and strains on the rest of your body, and that side of things isn't mentioned much. I live in the UK but even with our NHS, depending on where you live (as its very much a post code lottery here), there is very little consideration given to this, you tend to get the prosthetics and thats about it. The problem is that when and if we get referred to whoever, for any problems, like Kate has described, years on which are related to long term wear from using prosthetics, they often don't have the expertise to give the right input. So like you say, get the best medical care you can, preferably with those experienced in working with amputees, we really could do with a more holistic service, but we do need to be self-aware and take care of ourselves the best we can.

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