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Heather Mills - Amputee Forum
Systematic Chaos

Frustrated with some questions.

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Let me first say this as I'm sure in contributes greatly to my problems. I'm a BKA on my right leg, still have my left. I weigh upwards of 315 and am working on that. I had my leg amputated in July. I've been able to walk without any assistance for awhile.

I've broken my prosthetic leg twice. First time I was walking into a store and the top of the pylon came up through the bottom of the casing ( not sure what it's called ) second time I bent the pylon a little. I've been trying to live a normal life. Doing things like changing the tires on my car, which requires me to crawl around on the pavement and getting back up. I'm starting to feel as though maybe I need to baby the prosthetic leg. This is the temp one.

One day I went in to have it adjusted and it made a world of difference. I was able to wear it 13 hours that day. It felt so good and things were looking up. Next time I go to wear it I was back to it making my lower back hurt and I'm also experiencing pain in my left foot on the side. Just wasn't fitting good. That may have something to do with the weight and how my shoes get worn.

That adjustment made a huge difference but it was nothing I knew about needing. He made it on his own noticing while I was walking. Meaning, not knowing what to expect with a prosthetic leg you don't know what's " normal " and what can be improved upon.

I understand it's all a learning process but how often do you go back for adjustments and how much time is between them?

I'm just a little frustrated. Seems like my prosthetic guy is only as good as my ability to tell him what I feel needs adjusted. By that I mean if I go and I can't explain what I think needs adjusted there isn't much he can do aside from his own observations. I'm stating I feel it's my fault. I just don't know how to explain yet what needs adjusted or how to know. I do know that it can feel awesome. It has once. I just hope I can find my way back there again,

Another thing I seem to notice is that from one day to the next my prosthetic leg feels a little short or a little long.

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Hi, there! I'm a left below-knee and at the time of my amputation (five years ago), I was definitely on the heavy side. I'm slowly slimming down as I've been able to get back to being more active, so yes, I think that would help you. And a temporary prosthesis is indeed somewhat more "fragile" than the final version, so that's also a consideration for you.

That said, your various components (foot, pylon, connectors, socket) ought to be rated to your weight. Bending the pylon sounds odd to me...is there much in the way of side-to-side "give" in your socket that would have encouraged a bend, say when you were getting up off the ground?

You're right that your prosthetist depends on your input to tell what adjustments need to be made. That does not mean that you should have to know all the technical terms, though...he ought to be able to get a basic idea of what's happening by your description of your problems, your activities, and the way you walk. You're still pretty new at this, so it would not be unusual for you to need adjustments fairly often, especially if your stump seems to be shrinking or growing. My first year, I was in to my leg guys' office every month or two...after my very first fitting, I was back with them after only five days! I eventually reached the point where I only needed to go in every six months or so, and the last year I actually did go a full year. I am still shrinking, so that makes a difference...a long-time amputee with a stable stump can easily go for several years on a leg.

Your "sometimes too short/sometimes too long" problem sounds like it might be related to sock management. Have you been taught how to judge when you need to add or delete a stump sock? Since your socket is a rigid thing, adjusting your socks is the best way to keep your stump correctly positioned in your socket...too few socks and you ride too low (the leg feels "short") and too many socks can make you ride too high up in the socket (the leg is then too "long").

This is just a bunch of "guessing" on my part...let us know in detail what you're dealing with and I'm sure that someone will be able identify with it and offer assistance!

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welcome to the world of an amputee! ugg! ive been an amputee for 7 yrs. just last week, i went to have one of my legs adjusted. 6 months ago, the other one, getting the legs adjusted is not an all the time thing, but it happens, and one problem can need a few times of adjusting, its frustrating but just know it is part of the process.

with you being a new amputee, expect to need more adjustments that you might in the future, our bodys just are not used to having a "fake" leg. great we can have them and that you are so active, but adjustments are normal, keep going!

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I think Cheryl guessed properly. There are two things that make a successful prosthetic leg user; good balance and trust in your prosthetic leg.

It takes awhile to build up the balance, but if you can't balance well on only your prosthesis, you will take abnormally quick steps with the other leg to hurry up and get it on the ground again. This can cause problems with your gait as well as wear on your good leg and shoes. If you're wearing out your shoes on the good leg you are walking abnormally because of poor alignment and/or balance.

Trusting that your leg will always be there comes faster than the balance. Your mind still thinks a foot is there. That comes in handy when learning to use a prosthetic leg. I never think about walking anymore. I know that my leg is there and simply start walking. If it's a long distance, that's another story. Your leg has failed you in the past. That was probably weight related. Your legman needs to make sure that all your equipment is rated for your weight. Even when everything is properly done the replacement parts aren't as rugged as the natural equipment. Child amputees break the prostheses all the time because they are too rough on them.

Weight is a big deal to an amputee. The less you weigh, the better when it comes to prosthetic parts. Sock management is key to a comfortable socket. Once the initial atrophy has ceased weight gain or loss will drastically affect the fit of your leg. It is best to maintain a constant weight.

Good luck to you

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One other thing that might get addressed in the volumn change is the fact that sometimes, the body retaining fluid will change the fit of the socket as well..

Most stumps tend to swell during the night, and then, as you walk on it, over the course of the day, the fluid will work it's way out.... Kinda the opposite of your feet swelling by the end of the day.

I know that diet can be a big factor for me in fitting.. I have learned that if I want my socket to stay on the snug side, for some intense purpose.. that what I eat the day before will help do that..

Also, I have learned to stay away from those same foods before getting a new socket made so that there is no added swelling in the stump. i.e....garlic bread, ham, any kind of chip or salty cracker, will increase my stump size.. I once had eaten garlic bread with dinner the night before a casting for a new socket.. That socket was larger than my stump when I went for the check socket..and it all had to be done again.. The big deal about that, I drive 90 minutes just to get to my CP... don't want any unnecessary trips because of things like that again..

So, you see.... that there can be many variables in this life we now live as an amputee...... HOWEVER... the pylon going through the socket, and the bent pylon are not normal.... I wonder if your CP is using materials that are classed strong enough..

Also, please remember, check sockets are just that... I have broken two of them.. both, at very unfortunate times.They are not the "hard" socket..I have to be a lot easier on them, than I am on my hard socket..

So, volumn change, can be caused by several things.... weight, diet, shrinkage....

But, do keep the lines of communication open with your CP.. that is most important... The more questions that you ask in the beginning, the better understanding (and less frustration) you will have. And, don't feel guilty about the return trips.. In the beginning, most amps feel like they live in their CP's offices...It happens a lot.. we go through massive changes in the beginning, and it sounds like you are very active, which is good, but, the changes come with it.

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Thank you everyone for your responses. A lot of good points were made. I do need to watch the salty foods for sure. Swelling makes a huge difference. I'm not sure how I bent the pylon other then getting down or up from the concrete while changing my tires. They've BOTH since gone flat. lol It's on my project car. 72 impala.

I try and stay active. It's frustrating being able to only be as active as my leg allows. Had a decent day today. Was actually able to go to a store and get some exercise. That's really been bugging me. Been really bummed since I last saw my prosthetist. That's not usually like me. It finally lifted this morning. I'm just so unsure of how normal a life I can now lead. I'm into Geocaching, stained glass a koi pond and various other hobbies and I have a car I'd like to work on from time to time. With my temp leg it doesn't function ( bend at the knee ) like my old one so getting in and out of the car is different. I figure that's because of the socket and that the permanent leg won't be that way. Hoping so anyway.

I'm on disability now. I'm wanting to try that ticket to work but not sure how that works. Trying to learn more about that. I don't want to lose my disability until I know for sure this leg is going to be dependable.

While wearing my leg the place I seem to feel pain of discomfort is along the shin bone. I'm now wearing two three ply and one six ply. One question I have is while waiting for the time to get your permanent leg how many sockets does one go through with the temp leg? I'm on my one and only so far.

One thing I'm also noticing is that while I'm in my Prosthetist office after an adjustment or two, three it seems to feel ok. Once I've left it starts to feel off or painful. Usually my appointments are first thing in the morning. My next one we're going to make in the afternoon.

How normal of a life do you all feel you are living? I've heard of people sky diving, geocaching...etc. I'm hoping for good things down the road. Just a little doubt right now.

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You will be able to lead a normal life eventually, albeit somewhat different from what you knew before. You might have to alter the way you used to do some things. I can do anything I want to do. WANT is the key word there. I use the leg as an excuse to not do some things.

Your limb is going to change over the next 3-5 years. Me? it took the best part of 6 years for my stump to quit shrinking. All of us will shrink at a different rate. It is impossible to say how often you will need a new leg. Most legpeople want to change sockets when the patient is using 10 plies of socks. The prosthesis can become unstable when using more socks. Personally, I got my first leg the end of May. I needed a new socket the first of July, but had to wait til January because of insurance constraints. I've had a new socket once a year since. I should be able to use this socket for more than one year.

Once the initial swelling from surgery is gone, the muscles in your limb will atrophy due to lack of use. Personal body weight can change the way this occurs. It is true that your leg will be larger in the morning than after some use. It is always best to be cast for a new socket in the afternoon. For any other adjustments, it really shouldn't matter. Alignment isn't going to change with volume changes.

All legpeople have a reason for doing what they do. It might be right or wrong, but it is their way. You just need to make sure that you are safe on what your legperson has you wearing. In your case, you should have a carbon fiber socket with titanium and/or stainless parts and a foot rated for your weight and activity level. Don't argue that you are a K4 if you are really just a K2 or 3. K4 is for highly active individuals. The foot is stiffer and can be harder to use for a K2 or 3 level person. The rating has nothing to do with what you want to accomplish.

Good luck and keep on with those hobbies. The more active you are, the better. You have a few more months of relearning how to do things.

Neal

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I live a "basically normal" life, doing "basically normal" activities. There are some things where I've had to change the way I do them...I can't stand on tiptoe, for instance, because the arty ankle does not bend, so I've had to start using step-stools to reach things that are "high up." I've never had to worry about that, before, and it's sometimes frustrating. And I have to think about where I'm walking and what I'm doing when I'm trying to carry something large, because the arty foot can't feel if I'm stepping on something that's likely to make me take a fall. I've always been a clumsy gal, but now I have to be really careful about where I'm going and what might get in my way. Again, it's frustrating. And I want to make my "walking around time" worthwhile...I'm likely to drive someplace that I might have walked to in the past, just so that I can be assured of having plenty of comfortable walking time once I get there.

Like Neal, if I really do NOT feel like doing something, I'll sometimes let the leg take the blame...but if I really WANT to do something, I'll figure out a way to make it work!

One of the things that may take you some getting used to is just figuring out how to make those adjustments to allow yourself to do the activities you like. For a new amputee, the mental effort can be just as exhausting as the physical toll...after all, you're not really used to having to THINK about every move you need to make. But that's something that will fade with time, as you learn what your leg will and will not do. For some years, now, I've been at the point where most everyday activity is "automatic" to me...but every once in a while I'll suddenly realize that I'm about to make a movement that I've not tried before, and I find myself doing a lot of "thinking it through" VERY rapidly!

We have members here who do an amazing number of things...hiking, biking, swimming, surfing, scuba diving, running, motorcycle racing, skydiving, you-name it. There really is very little that you can't do, if you put your mind to it.

I do have a question about your comment about your knee "not bending": do you mean "not bending" at ALL, as in a totally stiff leg, or just "not bending" WELL, as in difficult to bend or not bending as far as you're used to? A below-knee amputation ought to leave you with a fair amount of knee-bend. It might not be to the same point as a natural knee will bend, but you ought to be able to manage at least something around 90 degrees. If there's definite trouble bending the knee, you might want to ask your leg guy about changing the trim line along the back of your socket. The other possibility is that since your ankle is not doing much in the way of bending, it makes it difficult to bend the knee and keep your balance. That you might be able to work on on your own.

Just keep trying, and keep asking questions. It's a major adjustment, but it is do-able...it just takes a little creativity!

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that ticket to work but not sure how that works. Trying to learn more about that. I don't want to lose my disability until I know for sure this leg is going to be dependable.

While wearing my leg the place I seem to feel pain of discomfort is along the shin bone. I'm now wearing two three ply and one six ply. One question I have is while waiting for the time to get your permanent leg how many sockets does one go through with the temp leg? I'm on my one and only so far.

One thing I'm also noticing is that while I'm in my Prosthetist office after an adjustment or two, three it seems to feel ok. Once I've left it starts to feel off or painful. Usually my appointments are first thing in the morning. My next one we're going to make in the afternoon.

How normal of a life do you all feel you are living? I've heard of people sky diving, geocaching...etc. I'm hoping for good things down the road. Just a little doubt right now.

I think my life is pretty normal, or normal for me, but then I have been using these legs for 40 yrs, and am bilateral, so although I may do things a bit differently, they have become my 'normal' in that time . Can't say I go sky diving, or anything like that, but in my time I have worked full time, married and raised three children and find ways of doing most of what I want to do.

In the early days its all new, and a bit uncomfortable but if you stick with it and do things a little at a time it will gradually improve. I wasn't quite sure what you meant by 'temporary leg', but with new legs. even 40 yrs on, I hate changing them and do break them in wearing them a few hours at at a time and gradually increasing the time, bit like maybe you would with a brand new pair of shoes. Your stump has to get used to, even very small changes in the socket. And its fairly typical, that a new leg feels wonderful while your in the Prosthetists office then not so comfy when you get it home ... don't panic .... unless its obviously doing damage or whatever .... just try and break it in gently. Even these days, I find I go further into the socket in the afternoons or if I have been walking more ... think thats normal ... and I carry a half sock and thin sock around with me to add at these times, to lift me out of it a bit.

he swelling will prob settle down as time goes on ... if you can keep the the stump up and wear a stump shrinker in the daytime if you are not wearing your prosthesis, though the actual shrinking process of the stump can take quite a while ... I had a revision amp at the end of 2008 and have probably noticed a lot of the shrinking in the last six months, and had linings added to the socket, as well as a socket change. For me mornings are always the best time and when my legs feel most comfortable. Initially, after my own revision when I first got my leg, I would wear it for a bit in the morning, then rest it, but when I put it on again in the afternoon ... it would 'always' feel uncomfortable and like it wasn't fitting ... but little by little this changed and nowadays I don't really notice this so much. I must admit regards my diet, I try to eat pretty healthily, probably don't eat salty foods anyway, and only think about it from the weight perspective ... but really haven't given too much thought to what types of food I have eaten and the time of day I have a prosthetic fitting over the forty years. For me I would rather have my socket on the looser side, and add socks, rather than have it too tight to get on in the morning ... but thats just me.

If you having problems bending your knee, as a b/k, talk to your prosthetist, there could be a few reasons. It could be that he has built the back/sides up higher to give you more support or could be you are wearing a liner which makes it more difficult for your knee to bend ... I think the shin bone is a common place to feel pressure ....but if its bothering you, talk to the prosthetist about it.

Don't get too disheartened ... you will get there .... I think the early months are the most frustrating .... but like Cheryl says give yourself time to figure out the adjustments you need to make, as well as learning tips that work for you and make things easier ....make sure you talk to your prosthetist about the things that are bothering you (like you have talked to us on here) and don't compare yourself with others who you may perceive to be doing more than you .... we are all different.

Ann

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You have just became a full fledged amputee.. We have all went through the period ( and at times I'm sure we still do...) when an adjustment is made, feels good in the legman's office and then not so great at home.. It's happened to all of us at some point.. and I'm sure it still does. Since I drive so far to see my CP.. there have been times that he has told me to go to lunch, go shopping, do something and come back in a couple of hours to see how things went.

As far as the shin bone getting sore, they can tweak it so it doesn't hurt in that spot. You just have to be able to "pin point" the spot, on the socket where it is painful. It is a pretty common area. Sometimes, just changing the set of the socket can do it, other times, they may even have to "grind" a relief out. Think about this.. Take a clear glass or jar.. now, imagine your stump fitting in the socket (or jar in this instance). Sometimes, by changing how the socket tilts, it changes the pressure spots.. Maybe, this will make it easier for you to understand. Again we are back to being very precise and honest with the CP when he is adjusting the socket.. Sometimes, if you are lucky, it can be done in a very simple adjustment..Sometimes, what works in one spot for relief might cause a pressure in another spot.. These things can all be remedied though..

Like the others, I'm not sure I understand about why you can't bend your knee.. Granted, it won't bend the same, but does it bend at all for you? What hinders you from bending it? The top of the socket? Or the liner? Food for thought. What if you take the leg off, but leave the liner on, does it bend better?

You will regain your life back.. it might be slower, but, it can be done.. When I got my first leg and started walking, I couldn't see how I could resume my life on the farm.. Eight years later, I'm still doing most everything I did before, and then some.. The things I don't do.. MUD.. but, I'm still running chain saws, driving tractors with equipment behind them, riding horses, motorcycles, atv's, even climbing ladders..It just takes a while, faith in yourself and your leg, which all comes in time.

If the desire to do it is still there, you will find a way, when the time is right..Just give it some time.

You didn't learn as a tike, to walk in one day, it was trial and error.. So is this.. what makes you think most now, will become habit, and you will just do it, until you encounter something unusual, as Cheryl said.

Hang in there...

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