Questions to other prosthesis users

[adamj]

Dear all, I posted a year or so ago in this forum to say that I am a University researcher trying to advance a project on understanding the experiences and needs of prosthesis users. I previously asked for any individuals to contact me if they wanted to discuss their experiences, and I'm grateful to those who did.

I am now at a stage where I have just have a few more directed questions I would like to discover answers to, one of which is:
'How do you know when your prosthesis is good enough for you?'

If you'd like to PM me a reply I would be happy to receive it that way, as well as via this thread.

I apologise to anyone that perceives this posting as a breach of forum privacy. I'd be happy to discuss this project further and you can find out more about me and the study I am doing if you go to the following: www.psychoprosthetics.ie or speak to me directly at 00353 (0) 1 700 7582.

Phil

[allenuk]

Phil - we haven't got a 'forum privacy' policy as such, so you certainly aren't breaking it!

Neither do we have an 'amputees only' policy. Anyone genuinely interested (or in some cases related to) amputees is more than welcome, as you are.

I think collectively we often feel that research is misdirected, as it seems focussed on producing new 100 metre champions rather than what we want, which is 7-day-a-week comfortable sockets!

Welcome again, and good wishes.


Allen.

[allenuk]

And to save a PM, my answer to your question above is fairly straightforward.

Nearly every brand-new socket hurts a bit. The ones that hurt a lot tend to be rejected at square one. The ones that are just moderately uncomfortable, like a pair of hard shoes, well, you walk round the prosthetics' room, and see if they improve.

In the UK we are encouraged to take them home at that stage, because it often takes several days to get your stump to settle into a new home.

At my hospital in Stanmore, North London, I usually go outside for a walk - only a few hundred yards, but you can often tell by the end of that whether the socket is a 'go-er' or not.

Not a simple answer, I'm afraid.

For me, it is a bit like trying on new shoes - (walking shoes, or boots, rather than slippers). You don't expect blissful feet-up-in-front-of-the-TV total comfort immediately - you expect them to fit, but know there is going to be some 'bedding in'. Mind you, I look forward to the day when it DOES feel like putting on a pair of slippers - then I'll know I have a comfortable socket!

Wish life WAS black and white; it might make it easier.


Allen.

[adamj]

Allen, thanks for the quick response there. It's much appreciated. Comfort does appear to be a key requirement in determining whether a prosthesis is 'good enough'.

Would anyone else agree or disagree or want to suggest another way you can tell whether a prosthesis is good enough?

[stonecutter]

I find that walking around the fitting room or back and forth along parallel bars doesn't tell the tale for me.

The fitting room is a considerable walk from the parkade. I find I usually can tell how it's feeling by the time I get to my truck in the parkade. I work at a very large and spread out educational facility. WHen I need to go walking through it to a construction project, it's not uncommon to have to walk for 2 kms or so just to have a 5 minute look at something. Then turn around and come back.

By the time I get back, I can usually tell you all about all the spots that hurt. If I were to remove the leg and liner, there will be a telltale red-spot and/or callus forming where it has been a problem before.

If this place taught prosthetics / orthotics, my life would be bliss, but the problem is that I don't have a lot of time to whip off to sit for an hour or two to get adjustments made.

So in answer to your question... it's never perfect. The problem with prosthetics in general is that we put something that's a combination of soft/hard/squishy into something that's hard. The soft/squishy parts change, sometimes at a rapid rate (sometimes within hours, sometimes within minutes...). The hard sockets only change with grinders / sanders / wrenches / pads / etc... You can never have a perfect fit from one to the other.

That being said. In the (almost) 19 years I've been an amputee, I have seen some small changes that have yielded more comfort for me...

[ann-]

As Allen says, not a simple answer and also depends on whether you are talking in terms of comfort or in terms of spec or technology.

If you are talking in terms of it being right in terms of comfort, I'd describe that as the sockets not hurting, not bruising, not rubbing and were allowing me to wear them and do everyday things, but I have been using prosthetics for many years .... a new amputee probably wouldn't describe them as comfortable, but they shouldn't be causing sores. For me as a bilateral, they'd both feel about the same height, my knees would be about level, and my legs, hips and back probably not aching at the end of the day.
However, the complicated bit is this comfort level is probably going to change from day to day, week to day, or even during the day, because most of us have volume changes, like when you wear a ring on your finger and it gets tighter during the day. So some days a prosthesis that was comfortable a day or so before, will no longer be so. (Hope I am making sense here).

If you are talking technology, I suppose you don't always know if its good enough,you can change components like feet, different sockets, liners etc., and you are not going to know until you have been able to change to something different and experiment with it until you work out its better for you in terms of letting you do more or you not having to use so much energy.

[adamj]

Stonecutter and Ann, thanks for the reply. It seems from what you and others have said that there are some fairly obvious means to observe whether a prosthesis is acceptable in terms of comfort, and then some more subtle aspects that might transpire over time that may or may not be worth seeking remedying.

Also, from what you've said it sounds like prostheses are never perfect, but what comes close to this is naturally sought after and there might be a trade-off of trying options/adjustments and time spent invested in this. Please correct me if I'm wrong here. You seem experienced in judging the appropriateness of comfort, but can I ask, what was it like when you were first starting off? Back before you had tried a number of prostheses and had some means of knowing what was acceptable and what was not?

Also, the point Ann raised about technology - you can't easily know what is good enough, so do you just wait until your current prosthesis is coming to the end of its life to try something different just for the sake of change, or is there something else going on here?

[allenuk]

Phil: in the UK (as you probably know) the NHS might still be great, but you get what you get, at least in the way of prostheses. Of course they'll change things, even feet, if it doesn't seem to meet your needs; and in North America your choice is limited by your level of insurance - most policies don't let you pick and choose, I doubt.

The other factor when 'starting off' on the long prosthetic road is that you Don't Know, and find out as you go what is comfortable and what isn't. You have to rely on the expertise and SYMPATHY of the prosthetic clinician to try their best to get you comfortable and walking.

Plus, at least in the UK, you have to nag, or at least promote your own cause. I saw a couple of guys with Echelon feet at my limb-fitting centre, and then watched the product video. I nagged for a bit, and luckily got an Echelon just before the last economic crunch when we had to pay all our money to the bankers instead. (The foot didn't solve my problems, but it was certainly a Good Move).

I think the key MIGHT be in the liner, or in newspeak, the interface between your stump and socket. It has got to be soft enough to be comfortable, and most amps would put softness way up their wish-list, yet it mustn't move about too much. Invent a new material for liners: very, very soft, but allowing very little movement stump-to-socket, and the world will be at your feet...


A.

[ann-]

Just picking up on your comment Adam about the technology, and also what Allen has also said on this. Allen is right, you don't know when you start off, and it is a long prosthetic road, there are also new developments all the time, which of course not everyone has access too, so sometimes its a bit of try and see, and not always as technological as I think people would expect, these days.

In the UK NHS, the position with technology, as Allen says, can be difficult and a lot depends on your amputation level. I am not sure what happens with upper body amps., but with legs, its going to be above knee amps., who are going to be the major users of the more hardware technology such as computer assisted knees, etc., there are some higher spec feet/ankle components, but at the start people usually get given basic set-ups to get started on, then like Allen says people usually have to highlight their own need for something they think is better.

Your question about 'do we wait until the prosthesis is coming to its end or is there something else going on here" is interesting, because, what I find is that if the prostheses are comfortable and letting me do what I want to do, I really don't want any changes made ... now whether this is just because I am a bit set in my ways or perhaps because I've had too many new prosthetists wanting to try out new innovations on me and them not working, I don't know .... but usually what I see is people just really wanting their prostheses to allow them to get on with the everyday things in life without too many problems, perhaps once these are established, then some, especially younger patients will want perhaps some kind of activity prosthesis or running blade or whatever, but usually that comes a bit later on.

However, I've been here and there, and read quite a bit on forums and what often seems to be happening nowadays is that people don't get to that settled state where they are back to doing the everyday things comfortably, so then often they feel they might need something different, or the prosthetist think a different set up might help them, sometimes though its not really clear, if it was something do with the previous set up, maybe the socket or the alignment that was causing the problem not the foot or some other component, then perhaps they wouldn't have needed a high spec. For most of us 'socket fit' is paramount, you can almost work ways around other things that are not right, but an incorrectly fitting socket, will cause sores etc., and stop even the best of walkers from wearing it. So, consequently a different foot or other component might not make a great difference if the socket or alignment is still wrong, whereas it might more if these parts were also fitting right. New amps., especially, are really very reliant on the prosthetist's experience and skills to know what they need, and sometimes nowadays they don't always have that experience or the collective experience of other prosthetists at the smaller centres.

I am not sure about prostheses coming to 'their end' as such. Components to wear out, but they are usually interchangeable, also sockets get too big or too tight, etc., but these can also be refitted. Quite often new sockets or feet can be put on basic set ups.

What I also read a lot is people thinking they can rush the process, not always breaking the prosthesis in, also think that the higher spec components will almost do the walking for them, in fact this is something the media and the government even seem to put across to the general public, when its really not the case, you still have to put in the effort, do the rehab etc. etc.

One of my own biggest concerns, is for the people who do need the more specialist input, and perhaps higher spec prostheses and they often can't get access to it, because either there is not enough skills or resources in their localities. Quite often amputees who maybe civilian and a higher level of amp., like bilateral above knees, who live outside of London or major cities, will have to fight to get the funding to perhaps get more specialist rehab or/and higher spec tech prostheses to enable them to walk, this can take months, if not years, whereas it should be automatic, but it is very much a post code lottery, although with the introduction of national commissioning this year am hoping things will improve.

[adamj]

Ok that's very helpful, thank you. It's also resonating with what others have told me so that's good news.

Can I ask, why might individuals become members of a forum like this? I understand it would be to connect with similar others, but for what purpose?

[allenuk]

Speaking only for myself: to help other people facing amputation. It was a VERY lonely and frightening world when I first encountered the realm of amputation, and I was helped more than I can say by other amps on sites like this one.

Secondly, to swap ideas and solutions, and to talk to people with similar problems.


A

[barclay]

Bravo Ann, I think you summed it up beautifully!
Learn to walk before you try to run - identify the problem before you try to fix it.

Phil, a succinct answer is that a leg fits when one isn't constantly thinking about the prosthesis or how to walk.

[adamj]

Thank you everyone for your responses. They're very helpful. I would welcome any further comments and hope that they might also be of interest to other users of this forum. If anyone would like to keep the discussion going I would be interested to hear if anyone has anything to add or would comment on what has already been said. Determining the appropriateness of a prosthesis and when it seems to reach a 'good enough' level seems to be something not so easily to tackle.

[allenuk]

I'm going to repeat here the answer I gave adamj in a PM earlier, as I'd like to know if my fellow amps generally agree with my point:

"Soft tissue is the answer, at least in my case. In my first year after amputation I was walking 20 miles a week, and enjoying every (tiring) minute of it.

"Then after two years, my residual tissue had largely disappeared, leaving me with a boney, boney stump (unlike the rest of my overweight body). And since then, we (me and the prosthetists) just haven't managed to find a way of compensating for the absence of that natural cushioning.

"[so} precisely the same socket and liner might score 9/10 for some lucky sod, but try putting the same rig on me and because of the absence of soft tissue, it might get 2/10."

I was talking to my prosthetist about this issue a day or two back, and he's going to try yet another recast, this time over a small distal cup plus a thing called (I think) a tibial relief liner - I have a really boney 'point' to my stump which has proved the biggest problem over the years.

A