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Gaza

what is wrong with prosthesisists

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i was told by my prosthesisist the other day that he knows what its like to be an amputee more than what i do, i told him through gritted teeth - thats nice.

I then asked so why do prosthesisists think if we are given the best knee unit and may be the best foot unit money can buy we can go on to do marathons without little regards to socket fit - hello wake-up us amputees dont need high-tec we can do marathons on broom handles if our socket is truly a good fit. Any average person can bolt a foot to a pylon a pylon to a knee and this to a plastic thingy, its prosthesisists with the skill of making a socket to fit the amputee's body correctly we need, and from what i can see, and read, not many prosthesisists can do it.

Prosthesisists please get back to the basics of why we need you, forget putting emphasis on the high-tec equipment you can offer us, and made by others, its your skill to make sockets that fit we come to you for - as an engineer i have altered my own socket to make it fit - its not rocket sience just eye and hand skill with a little anatomy knowlage - may be i should retrain as a prosthesisist and help the many desperate amputees left to struggle with ill-fitting sockets, after all how many of us have been told "give it a week and see how it goes" - to all prosthisisists reading these words, if i don't fit in the clinic it don't fit. Gaza x

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may be i should retrain as a prosthesisist and help the many desperate amputees left to struggle with ill-fitting sockets

Maybe you should Gaza!

That's what Marcus did and look where he is now? ;)

I agree though, I'm sometimes horrified at some of the experiences I've read about prosthetists and their shoddy jobs. :huh:

It shouldn't be allowed, but the sad fact is that it is. :(

However, I am very lucky to have a good one, so I should count my blessings really. But I really feel for those that don't.

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A lot of times I think my pros wants me to take something that I'm not comfortable with. I have done it, when I didn't know what it was supposed to feel like. There's a lot for us learn. Now I think I get on his nerves - too bad!

I was cast for a new socket 2 weeks ago and haven't heard one word from him. One of my biggest problems with him is that he's very neglectful about calling. I will say that I think he's spread too thin; but I'm over it.

Yesterday I made an appointment with a pros who was recommended to me by an ak. My appt isn't until next Thursday and I don't know what to say if my regular pros does happen to cAll and tell me my socket is done. Any suggestions? The guy I'm seeing next week is going to evaluate me at no charge and tell me if it's me or them.

I could call my pros but I'm being hardheaded and am having a little stand off with him here. I feel like I'm the customer and he should have followed up at least a week ago.

Thanks for letting me vent.

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after all how many of us have been told "give it a week and see how it goes" - to all prosthisisists reading these words, if i don't fit in the clinic it don't fit. Gaza x

How true!

:huh: :( :huh:

Linda

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i was told by my prosthesisist the other day that he knows what its like to be an amputee more than what i do, i told him through gritted teeth - thats nice.

Hi Gaza

I would change my prothsetist now! My prosthetist and I are a team. I value his judgement and he mine, as you've correctly stated the socket is everything.

Forget the knee, start at the stump.

The relationship you have with your prosthetist determs how you progress in the wierd and wacky world of prothstectics.

The more complecated prothstetics become, the more we need to be able to trust our prosthetists!!

Becareful out there

Paul ;)

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Paul, i understand your sentiment of trusting your prosthetisist but, and its a big but, tust has to be earned, i hear so many stories of pros sending patients away in pain and discomfort its just not on - the word of prosthetics is a world of high-tec sience, annatomy, craftmanship, empathy and customer service, i just don't think some are up to the job, the problem is when a window cleaner isn't up to the job you get dirty windows, when a pro isn't up to the job you get a shattered person - i just don't think in this field their is room for error, the stakes are just too high. Come on prosthetisists raise your game.

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Marcia, change your prostetisist - why be treated badly you can get that sort of service anywhere, as Paul rightly said you have to have trust - but like i say it has to be earned. when you go to see this new guy explain why you have gone to him, let him know you feel let down and state the level of service you expect, if he agrees you can challenge him if he falls short - i stayed with a pro for four years listening to excuse after excuse of why things went wrong - taking four years to tell him to **** off was the worse thing i could have done, i should have done it years earlier - Gaza x

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Hi

Well years ago I would have agreed with Paul, I trusted my Prosthetist, valued their judgement etc. etc., I had no reason not to, he got me walking. He had been doing the job for many years and was good at it.

Over the last ten years however I have experienced a series of Prosthetists, often newly qualified, who have lots of ideas of what I should be wearing, but when they try and put it into practice doesn't seem to work.

I too, have had to chase up appointments, parts that have been told that have been ordered that haven't and never materialize.

In my area its just not easy to change to another Prosthetist, we have just one there is not a choice. To go out of area is possible, after a fight for funding, but travelling difficult and costly!

Sorry for the rant.

Ann

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Finding a good prosthetist can be a real nightmare, can't it? Sometimes, good prosthetists seem to be like gold dust: Some can be insensitive & rude or have more 'off days' than most.

i was told by my prosthesisist the other day that he knows what its like to be an amputee more than what i do...

Some can be lousey at fabricating sockets...etc,. And, some appear to be on another planet. :rolleyes:

But, quite a few are very good (or even excellent) at their job.

I agree with Paul:

The relationship you have with your prosthetist determs how you progress in the wierd and wacky world of prothstectics.

After all we're only human (& so are they ;) ) and so that makes good communication sooo important!

Also, I should imagine that there's an art to casting, measuring & fitting a prosthesis. Especially a lower limb prosthesis, where there's fluctuating body weight (it probably happens to most of us - exercise, diet, illness, hormones...etc.) and gravity to contend with. And also in some parts of the world, there's things like budget constraints as Ann mentioned.

I don't mean that you should put up with insensitive behaviour or ill-fitting sockets. Not at all!! You should always say when something doesn't feel comfortable. And, if you have a prosthesis in the process of being made, I've found that it's always a good idea to insist on making an appointment before you leave for home.

  I was cast for a new socket 2 weeks ago and haven't heard one word from him.

If you've given it your best shot & you don't think anything's going anywhere, you should change your prosthetist or even centres. The chances are that you'll find a 'good one' next time! :)

Lizzie

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These are things that are said on every amputee forum that I'm on. I hear this stuff so frequently that I get angry and want to scream. You have to demand the best, you have to insist that it's comfortable, you have to be a thron in your prosthetist side, call him daily if you have to and let them know that you're upset if things aren't right.

I admit I have excepted legs that weren't right they were tight in areas, loose in others, didn't look good and other big/small problems. I signed for the legs thinking they did all this and I should take the leg and go on with life. DON'T do this to yourself. Years of experience and finding out that I do have a choice and knowing it's my decision from start to finish I pick the foot, I pick the components, I pick the color of my socket, and what material it's made from. I bring in my choices of stuff and we work it out by talking about each thing etc. Be proactive in the decisions if your prosthetist doesn't allow you to then find another. Don't sign for ANY LEG THAT HURTS YOU ANYWHERE.

Hiring a prothstist is like interviewing this person for a job (just like you interview for a job you want) ask questions like how long have you been a prosthetist, how many patients do you see a day, week etc, will you listen to my concerns about the socket fit, will you listen to my choices of compents, and feet, how long will it take to make my prosthesis from the test or check socket to the final or definative leg. Remember this person is going to be a part of your life for a very long time so it has to be someone that will work for YOU and think of YOU. I like to think of my relationship with my prosthetist as a marriage he's going to be in my life until one of us either moves or dies. It's important to have good communitcation with him or her for that matter.

If you do hire a prosthetist and find that he/she doesn't make you a leg that works for you and makes excuses after excuses then fire them. That's your right. A few of my past prosthetist I didn't fire them but I never returned and found someone else. I have actually fired one guy as he tried two times without success to make me a check socket and so therefore I figured he wouldn't get it right and fired him and never looked back. Ask to talk to a patient of the same age and amputation level if you can and ask them how they like this person etc.

I know that not everyone can do this as maybe there is only one prosthetist in their area or maybe their insurance company is only contracted with one facility etc in the network and it cost more to travel outside of the network but if none of this applies to you then you have to think of yourself and what is best for you not what's best for them. Remember even tho they have a degree doesn't mean they are good at what they do. I am very lucky that I have the prosthetist that I do he goes above and beyond and I would travel across the country if I had to for him to make my legs.

Remember of all things the MOST IMPORTANT part of a prosthesis is the Socket as others have pointed out. This is what your leg is in all day long if the socket is comfortable then you could attach a block of wood to the bottom and walk with it.

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Hi All:

After reading a lot, I am so blessed to have stumbled on the guy I use for my builds.

I have seen the "work" of some other prots in my area and even I can see that they are producing crap. I think this has a bit to do with the folowing:

In this part of the country, it is a fact that 95% of amps give up on their use of a prot within the first year of being an amp for a bunch of reasons.

When you look at the dollar amount per prot , the work in producing a good socket etc, perhaps the failure of those 95%s has a direct result on the remaining 5% who have not given up.

That aside, if you are one of the 5%, you are entitled to a good fit regardless how much or long the prot guy needs to work to get it to you.

ED

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I was fitted last month and got to take my new leg home 2 weeks ago and yes, the socket is giving me some problems.

I CAN IDENTIFY WITH YOU!

All the high tech hoopla is great, but if the socket doesn't fit right, and you cringe at every step what good is it?

I would settle with a great fitting socket with a long john silvers leg!

This is a test for my legman to get it right. So far his father made all my legs and I could walk out without going back for anything. His son is a conservative Republican, and not that I hold anything against him for that, but it would seem like "expertise" would compliment his personality-we'll see.

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I would settle with a great fitting socket with a long john silvers leg!

You can have one like mine!

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HI all,

I think i`m going to go nuts soon!!!!

All i want is a leg socket that fits, I have some soft tissue( as they call it) that causes problems, at the top of my leg. I`m not that big, maybe a typical english pear shape, but i am not over weight by any means. Why is it that nearly a year on, i am still struggling and not getting around, as i was told last week, "GIVE IT A FEW WEEKS TO SEE HOW IT GOES" Where have i heard that before?I have ask questions, they have made new sockets, on my last socket it took six remoulds and its still not right. I must say that i have got to the point of giving up and getting in to the wheel chair, But i see the success that can be achieved, and think one day soon that will be me, so thank you all for keeping me going.

Michelle

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Hi Michelle are you A/K? What type of sucket are you stuggling with? <_<

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To Michelle:

As I stated before, I am blessed to have found the prot guy that I have.

We often talk about some of the computer aided processes and othe new to the market gizmos. He still tells me that for an ak, they won't make a difference.

What is important to him is the socket...that's it...that's all.

He will cast me once........spend several appointments adjusting the check socket as he "sees" it. Will give up and redo the casting if necessary......seems to take forever until we get to a point that he decides to laminate!!

With every new socket, he is doing something to me that I am not aware of until later.....sometimes he was "straightening me up more".........sometimes it's a change in the angle etc.................in his words "it is an art"......he gets very "pissed" at some of the work of others that he has seen.

Regardless.....................we are all entitled to a good fit....no matter what it takes!!!!!!

ED

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Michelle,

As Eddie says the socket is the most important part of any leg AK or BK. If the socket doesn't fit in anyway then it's not going to work. If it rubs you it will only make sores on you if it's to tight it can cause circulation problems etc. If this guy isn't making you a socket that is comfortable maybe it's time to find another person to do it even if it's someone in the same office (if that is possible) I know some don't have the luxury of finding someone else as this person might be the only one. I sure do hope you can find someone else and that soon you'll see your dreams become a reality.

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Hi

wholeheartedly agree with what everyone has said, although strongly feel that if you are in the UK under the NHS it really isn't always possible to find another Prosthetist and sometimes you feeling like you are banging your head against a brick wall. My centre, for example, has no consultant and only one prosthetist. Out of area treatment works for some but it is a constant battle and financially unavailbe for others.

What I have found is it is very hard complaining on your own about the situation, you just get seen as a troublemaker and get very little notice taken of your medical situation.

What I would advise people, esp. in the UK, to do if they are consistently having problems is either contact or join your User Group (or start one up if there isn't one). Let them know the problems you are experiencing, its probable that others are experiencing the same problems and are afraid of speaking up. I have found that the User Group does have more influence and is listened to more than an individual. However, most of all, speak out about the problems, try and make other healthcare professionals aware of the situation.

My own User Group is now very active trying to get services improved, it is a very slow process, but I am sure we will get improvements eventually.

Ann

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What I have found is it is very hard complaining on your own.  I have found that the User Group does have more influence and is listened to more than an individual.

My own User Group is now very active trying to get services improved, it is a very slow process, but I am sure we will get improvements eventually.

Hi Ann

I can sympathise with your predicament, I don’t know what region you are based, user groups can be an empowering allie.

This forum is great for sounding off and gaining confidence to take on your PCT.

In Essex we have formed a hospital based user group outside of the Disablement centre.

That way prothstetists are invited as are other health workers to comment on the issues on neutral ground.

The meetings are chaired by a PALS (Patient Advice& Liaisons Service) manager, who is impartial.

Our group is made up of Amps, Professionals (Prothsetists, Physio’s, Nurses, Doctor’s etc) and Advocates .

See if you have a ICAS (Independent Conciliation Advocacy Service) in your area, they could support you in your fight and add weight and pressure to the battle. ;)

Good luck

PJ

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Hi Paul

Yes we have already done some of the things you have mentioned. Our user group used to meet within the centre, we now meet elsewhere and altho. our chairman is a user, members consist of user's and also relatives of users. Like your group, we invite prosthetist and other health professionals to our meeting periodically.

In past few years the group has been working hard to improve the services here, and I think very slowly we might be getting somewhere. Because our centre is so small, users never get to meet each other so we have organized regular social events to give people contact, which have proved to be quite popular.

We do have ICAS in our area, have been involved with them for advice. I have personally taken on my PCT but am finding that now the User Group is pushing we do seem to be being taken notice of.

Ann

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That's a great result Ann!

I always felt bad for you and what you were going through, but it seems that now you have gained some power in your 'fight' to be heard and for better quality limb-makers and products.

I wish you all the best with it! You deserve it. :D

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Good for you Ann! Please let us know how things progress

PJ :D

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Hi, Paul

I am aka and i have got a Iceross® Transfemoral Seal-In™with the socket made out of a softer inner plastic and a hard outer mould, (i do not know what the technical name for it is.) with a total knee. The whole thing weights in at about 11 pounds.

Having written to Exeter and told them i was not happy, somebody else now helps with making my casts, but that still is not helping, as you can tell. What to do for the best now is beyond me

Anyway i now have sores from this new leg and can not wear it again for a few days. But i will keep going, and i will get there in the end.

Michelle

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I have got a Iceross® Transfemoral Seal-In™

Hi Michelle

I tried a Iceross but found it led to much discomfort. I don't have a lot of coverage on the end of my stump. I now use TEC which gives me protection and suspension. It took my prothetist and I nearly a year to perfect!

Perhaps a case conference would decide what is best for you? :)

Hope it works out

PJ

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Hi Paul

Saw my Prosthetist at the end of last week who is now suggesting trying a Tec with the Harmony System, is this what you are using? I am a bit unsure of this as it was a Tec which started off my problems, altho. this was some years ago, and I have been told that advances have been made! I too have very little coverage on the end of my stumps which was what caused the problems last time, stump is sort of cone shaped and before I just ended up on end which caused a pressure sore.

Ann

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