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RozM

Roz's Revision

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Roz, it sounds really frustrating to me... I hope they can get you sorted out soon!

I've been in a pin system right from the start and have done well with it... but I have heard of people who have problems with it. I would have thought, as you do, that they would have tried determining in advance whether you would be one of those who had sensitivity problems.

I can offer one little bit of information for you, which is that I have problems with my pin system ONLY when something's happened to cause me to bottom out in my socket. My normal suspension keeps me floating slightly above the bottom of the socket, so there is not a great deal of pressure from the pin. As an ERTL, your situation is most likely different... I'd guess that they'd expect you to be able to "stand" on your stump.

One other thing I've been doing for a little over a year, now, is to wear a suspension sleeve over my pin system... it's made a huge difference in stability. Volume changes are still a problem for me, so anything to help on that front is a good thing.

Please keep us posted... I want to hear that you're up and dancing soon!

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Hi Roz,

It's good to hear from you. Congrats on everything going so well.

Re: the pin system. Why don't you ask them to give it another try? I have been wearing a pin system from the beginning and, like Cheryl, have done well with it. I did try the supracondular system once but found it way too restrictive over the knee. I love the freedom of movement that you get around the knee with the pin system and am very happy with it.

Re: tolerating pressure on the bottom of the stump - from what I understand the whole idea of a pin system is that you bear weight everywhere and not just on the bottom of your leg. My leg hasn't shrunk for a long time now and so I tend not to have problems with it any more but I can echo cheryl when she says that the only time she has trouble is when the socket gets way too big and you sink down into the bottom of it. For me too, I think I spend most of my time kind of suspended in my socket so that the botoom of my stump doesn't even touch the bottom of the socket, or if it does the pressure is so minimal that I don't notice it. Most of my pressure I think (although can't really tell to be honest) is around the sides of my stump and at the top of the socket. I think that is the way it is meant to be with a pin system.

My advice to you would be to push them at the limb centre to make you a socket that actually fits you that you can try out with the pin system because I can't see how there is any way on this earth that either you or they can tell whether you will be able to tolerate it without trying one that fits you out first. I haven't tried any other suspension system so can't really help you with regards to that but honestly I love the pin system. It is so quick and easy that I spend no time in the morning or evening putting the leg on or taking it off and if it is hurting or the liner is stinging a bit during the day at work I can just press the button and off it comes quickly and easily causing the minimum of fuss and agro - which I find is a life saver when I am sitting in meetings or lectures with everyone else around me because when it gets like that it can be very difficult to concentrate on anything but the "I need to get my leg off now" thought. I can't imagine what it would be like if it was more difficult or cumbersome or louder or more faffy to do.

Anyway, sorry for going on but i can heartedly recommend the pin system and from my limited knowledge I really wouldn't say that you need to be able to tolerate much pressure around the bottom of your stump at all to be able to use it - so I would say push on with it and keep at them until they make you a socket that works.

Just as a bit of an example - I even three years after my amputation can't stand - and I mean really can't stand - anyone, even me, even so much as touching the bottom of my stump. Any pressure at all there and it feels like it is going to explode (I have skin grafts there and so can't feel anything on the skin but boy can I feel it underneath). And I can tolerate the pressure from the pin system without a problem. So please please don't give up on it and keep pushing them.

Fiona

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My advice to you would be to push them at the limb centre to make you a socket that actually fits you that you can try out with the pin system because I can't see how there is any way on this earth that either you or they can tell whether you will be able to tolerate it without trying one that fits you out first.

I think Fiona is making a good point here, generally, with regards fitting. I do wonder how often I have been told that my stump "can't tolerate a particular type of prosthesis", when its not been made to fit correctly in the first place. Thinking aloud here, but expect that most of us have had prosthetists who "just get it right" (others not quite so right), really our mobility etc. depends on their knowledge, expertise, etc. its quite scarey when you think about it. Think if we have a good prosthetist we just have to try and hold on to them, don't let them move, change job, retire or die ... we need good prosthetists.

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Hi Roz, I've never had a pin system. my last leg was a harmony vacuum system and I love it. I use hand lotion in order to fit it on properly. Skully Cat has a new leg that she loves. it has a vacuum pump assisted so she doesn't need to have the vacuum pump on the leg. She also has the new type of foot from bioquest. www.bioquestpros.com. everyone I talked to loves this foot. That's my 2 cents worth, I hope it helps out.

Jerry

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Hello everyone;

Happy New Year to you all!

Many thanks for your informative and supportive replies.

I've had three sockets in 2007 from my limb centre, and they've all been a bad fit - the Pelite liner of my first supracondylar socket of 2007 had to be covered with leather before it would even fit in the socket! Now, that can't possibly have been anything to do with my stump changing shape - they were actually made a different shape from each other! The sockets I had before my revision were a better fit, but I was compromised by my scar problems - a fine example of Sod's law at work, there!

This confirms what my PT has said - that something's gone amiss with socket-making at my limb centre, and it's difficult to have confidence that they'll get it right if I give them another chance with a technology they've bungled before...

Fiona, I can really relate to what you've said about being uncomfortable in meetings, and your argument is very compelling, and I might well mention to my consultant (without naming you) how you have no problems or discomfort from the pin system despite having a very sensitive stump. I'm just desperate to get a leg I can wear, and as my limb centre haven't been able to make me either a supracondylar or a pin leg which works, I'm inclined to try something different in the hope that it might yield better results.

So, I've decided (for the moment) to proceed with the "specialist" who's coming to fit me for the TEC liner, followed by a new socket the same day (I believe); this approach might also take me one step closer to the mythical Harmony system, which I do like the sound of...

When I was trying the pin system that didn't fit, I also got to try an Elation, albeit briefly - wow, it was odd! My first impression was that it was stiff and "dead" - nothing like as responsive as my Seattle Light Foot. For those who have an Elation as well as another everyday foot, do you get used to the difference?

Thanks for the info on the Bioquest foot, fivestringcooper - that looks amazing! I liked the comparison on their Practitioner brochure, between their foot and my Seattle Light Foot; if the PerfectStride II is almost TWICE as energy-efficient, I've GOT to try it! I've put my request in!

Has anyone else graduated from a regular (valved) suction socket to a Harmony system? And does the Harmony system restrict the height of foot you can use?

Wish me luck for 17th! I can only wear my old socket for about 2 hours before it starts doing unpleasant things to my skin, so waiting 10 days under these conditions is driving me nuts..! :angry:

Best wishes

Roz. :)

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I've had three sockets in 2007 from my limb centre, and they've all been a bad fit - the Pelite liner of my first supracondylar socket of 2007 had to be covered with leather before it would even fit in the socket! Now, that can't possibly have been anything to do with my stump changing shape - they were actually made a different shape from each other! The sockets I had before my revision were a better fit, but I was compromised by my scar problems...

Leather linings aren't ideal, but one leather lining isn't a big deal really is it? ;) But, seriously, Roz, In their defense: You've had one major and one fairly major surgery in a short period of time. Plus the fact that you had quite a bit going on beforehand that may, or may not, have affected your circulation. What I'm trying to say is that it's still early days and your circulation will affect how much you swell. I know I'm unique, but when I'm being cast I swell up so much that I have to take my current limb off just before the casting, otherwise the resultant socket is way too big! :unsure: Also, if you have a skinny leg as I do (both in my case :blink:), you will find fitting difficult. Give it 2 years from your last surgery & then see how much easier fitting is. :)

Btw, in future, I suggest you ask them to use one of the gadgets that's available for pressure casting (I'm not sure if that's the correct term?). When they use them it feels as though your head is going to blow off, but at least the socket fits better. :P

OK, lecture over & good luck for the 17th! :D

Lizzie :)

PS I find being able to loosen the locking pin on my BK a lifesaver too.

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Hi Roz

Like Lizzie says wouldn't worry about just one leather lining, its quite usual for my sockets to have several of these and the PTB I wear with the Pelite liner, I always have it lined with leather from the start (really because I used to have leather sockets) as am more comfortable with that.

With regard the feet. The feet I use are, and always have been pretty basic (forget what they are called) however did try the Elation a few years back, mainly because I wanted to wear different heel heights. I did interchange them with my other leg and didn't find any real difference to my basic feet - so if you are used to a more responsive foot I am not that surprised you are noticing a difference. Actually, I didn't continue with the Elation, I went back to my basic feet. I found adjusting the heel heights quite tricky and also had a couple of times where the adjustment hadn't locked in properly and slipped, however, this was a few years back so they might have improved on it. However, not wanting to put you off, I have tried a few new types of feet the last few years and do find I prefer my basic feet (thats probably just me being set in my ways).

As regards the Harmony and the foot height, I can't remember that much, but do know there is a fair amount of hardware to fit in with the valve etc., I would imagine it depends on the length of your stump also. When I tried it I was using the basic foot, one of my stumps is fairly long which sometimes causes difficulties with various bits of hardware but don't remember it being a problem.

With regards your Tec liner do you know if you are having an "off the shelf" liner or custom made one. Because of my skin grafts I had a custom made one but did have to wait a while for it, which was a bit of a drawback, but I know someone who wears a Tec/Harmony and gets on very well with it, he's very active, very mobile and does quite a heavy manual job, which I don't think he'd be able to do if the limb wasn't comfortable. So it does work very well for some people.

Good luck on the 17th.

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Hi Roz,

Re: the elation foot. I have one of these and also a flex foot. I wear the elation foot on a day to day basis because I like being able to adjust the height of the heel. I find that if I wear it flat then yes it does have a lot less response and give than the flex foot, but it is much more responsive when worn with high heels.

I only really wear my flex foot leg for the gym or if I am going on a walk now and am so used to the elation foot that I find it quite strange having that much response in the flex foot if I do decide to wear it with normal shoes on a day to day basis.

Having said that I have had times when I have worn the flex foot on a daily basis and only worn the elation foot at work walking round the office etc (kept it at work and got changed into it when got there, changed out of it on way home - now it is the reverse). When I then went from the flex foot to the elation foot I did notice the difference in response. I suppose it is just what you are used to really.

horses for courses in short. What I would say though is if possible get both. The elation foot really is no good for doing sports but having one means you are not restricted on shoe choice (or not as restricted as you would be if you didn't have one). In the reverse, the flex foot is no good for wearing different heel heights with. They both do what they say on the packet I suppose.

I have been thinking about it recently actually and have decided that what every amputee should have leg wise is the following:

1. flex foot type leg for doing sporty things in

2. adjustable heel leg for every day heel wearing

3. really good looking leg for wearing sandals and looking pretty

4. water leg for going to the beach

5. water leg with adjustable ankle for diving (if that floats your boat) and

6. running leg

With all of those I reckon anything would be possible. Problem is the NHS would never give them all out and noone normal could possibly afford to buy all of them and keep them maintained.

In short anything you get told by the NHS about bringing you back to where you were before you lost your leg if you were in any way active or liked to look remotely nice beforehand is a load of old cobblers.

Right sorry for rambling on. Have two hearings in Jan and Feb at work and so am obviously so stressed about it all I am diong massive work avoidance.

Good luck for 17th.

Fiona

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Hi everyone;

Thanks very much for your informative feedback.

I perhaps wasn't clear about the socket and Pelite liner problem - they had to cover the outside of the liner with leather to make it fit in the socket, as well as lining it with leather on the inside, and that was even though I was wearing a Derma Seal sock, which is quite thick anyway - this socket has been a bad fit right from the outset, when I was cast for it immediately after my revision surgery, which means it's a terrible fit now, six months later...

Fiona - it's good to hear that the Elation is more responsive when worn with heels; I imagine I'll probably end up with one on one of my legs. I hope your work-avoidance helped you prepare for what lay ahead! I have to do that too - I think it helps!

Well, the fitting of my new leg on the 17th was brilliant, and I'm going to be getting a Harmony socket!

Before the appointment I wrote to my prosthetist and my consultant expressing my concerns about the lack of response from the Elation foot for everyday use, and also asking whether the proposed suction socket might lead to a Harmony system, and - lo and behold - when I arrived on 17th, I was introduced to an Otto Bock Harmony consultant! I was there for over 7 hours for just the initial fitting, and I'm extremely optimistic that the resultant system will be excellent.

Firstly, I was told that the Harmony system involves the use of a total contact socket, which would include some contact with the distal end of my stump, and when the Harmony consultant pressed his palm against the end of my stump to see how it would react to this, there was no problem.

I was then fitted with a Simplicity polyurethane liner, and, as my stump is not particularly bony, an off-the-shelf one was fine; we ended going down one size from the first trial. It was explained that in order to sustain the vacuum of the Harmony system I'd have to wear a sleeve, and I tried it to see how it felt; I haven't worn a sleeve since my first supracondylar socket, and I found that my original silicone sleeve was heavy and quite restrictive to my knee flexure, but this one (I think it was a VASS sleeve) was light and much less costricting.

Then it was on to being cast. This was done over the liner, and, being my first non-supracondylar socket, I was interested to see how the plaster was kept so much lower around my knee. The cast was completely covered with a rubbery sock and a suction pump was attached, which really squeezed the cast to my stump, but some space at the distal end was maintained by a roll of material, I believe to allow for some accommodation of my soft tissue. I also had to partially tighten up the muscle in my stump to ensure that the resulting socket didn't press on any shape-change caused by muscle-tightening.

I then had to wait for the check-socket to be made, so I caught up with some work and had lunch, and then it was on to working out where the Harmony pump attachment should be fitted on the check-socket. After another wait, I got to walk in a Harmony system for the first time.

After tweaking the alignment a bit and making sure there was a proper seal between the socket and the sleeve, I had to ignore the stiffness of the basic foot, but I was intrigued by the feel of it; I didn't notice any problem with the weight of the Harmony unit, and after a few steps, it really did feel very much a part of me.

The socket wasn't quite right, though - similarly to my previously-attempted pin-system socket, with each step I got a feeling of discomfort at the back of my tibial bone-end, a slight dull pain towards the back of the distal end of my stump. I wasn't aware of sinking into the socket, but the Harmony man said we should try adding more support under the end of my stump - making use of the adjustment space he had left during casting. He pumped some liquid silicone into the bottom of the check socket and I had to don the leg and stand in the socket for a few minutes while it set. Result! A big improvement - much less discomfort at the back of my stump. We even added more silicone, and it got even more comfortable - how about that?!? Adding support right at the distal end made the socket more comfortable, but then, because the silicone had flowed to exactly where it was needed, it was perfectly-fitted to my stump.

There followed more tweaking of alignment and making sure that a vacuum was developing properly and quickly as I walked, and everything felt amazingly good - the Harmony man did what I suppose is the system's party-piece - I sat in a chair while he tried to pull the leg off, and it simply would not move - he ended up dragging me in the chair across the carpet, and the leg wasn't budging by even a millimetre! Most impressive!

The next stage is another long session, during which I'll try out another check socket (made from a cast taken from the first check socket, including the corrections made with the liquid silicone), a definitive carbon fibre socket will be made, and then there'll be apparently extremely accurate alignment using lasers. All that should take place in about another two weeks...

I'm not sure which foot he said I'll get (- Otto Bock Axtion, I think - any thoughts, anyone?), but having had the fit closely defined with the liquid silicone, the definitive socket will be shorter, so there's a little more height available; I'm hoping there might be enough space for an Endolite Brio adjustable ankle, but there simply might not be enough space, so I'll settle for a good foot.

So, the saga of my trying to get a decent leg continues, but it's now looking very good indeed!

Now, I'm the first to believe that every cloud has a silver lining, and the cloud of this wait for a decent leg looks like it really will have a silver lining in the shape of my Harmony system, but my brother has occasionally grimly asserted that every silver lining has a cloud! ...and, sure enough, the day after my brilliant Harmony session, I fell onto my stump!

I was talking to my boss while walking (without leg) outside in the lovely English winter dampness, and I didn't realise that I'd planted my one-crutch onto a new eruption of moss, and suddenly it skidded away forwards, and I went down with my stump folded underneath me - ouch! I immediately developed a bruise on the front edge of my tibial bone end, and there's a bit of swelling at the end, but the skin wasn't broken. Oh, well - I needed an excuse for a lazy weekend - there's my silver lining! I'll be sure to be very careful in the days leading up to final fitting and receiving my Harmony leg, and I suppose I needed such a reminder..!

However, I got a brilliant compliment from my boss - he said it wasn't until I fell that he was reminded that I am disabled, because even though I have to use my one-crutch almost all the time right now instead of my ill-fitting leg, no-one thinks of me as disabled at all... I think that's great (particularly since my boss used to be a professional athlete!), but they ain't seen nuthin' yet - when I've got a decent leg, they won't be able to keep up with me!

Best wishes

Roz. :)

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Hi Roz,

Re: the elation foot. I have one of these and also a flex foot. I wear the elation foot on a day to day basis because I like being able to adjust the height of the heel. I find that if I wear it flat then yes it does have a lot less response and give than the flex foot, but it is much more responsive when worn with high heels.

I only really wear my flex foot leg for the gym or if I am going on a walk now and am so used to the elation foot that I find it quite strange having that much response in the flex foot if I do decide to wear it with normal shoes on a day to day basis.

Having said that I have had times when I have worn the flex foot on a daily basis and only worn the elation foot at work walking round the office etc (kept it at work and got changed into it when got there, changed out of it on way home - now it is the reverse). When I then went from the flex foot to the elation foot I did notice the difference in response. I suppose it is just what you are used to really.

horses for courses in short. What I would say though is if possible get both. The elation foot really is no good for doing sports but having one means you are not restricted on shoe choice (or not as restricted as you would be if you didn't have one). In the reverse, the flex foot is no good for wearing different heel heights with. They both do what they say on the packet I suppose.

I have been thinking about it recently actually and have decided that what every amputee should have leg wise is the following:

1. flex foot type leg for doing sporty things in

2. adjustable heel leg for every day heel wearing

3. really good looking leg for wearing sandals and looking pretty

4. water leg for going to the beach

5. water leg with adjustable ankle for diving (if that floats your boat) and

6. running leg

With all of those I reckon anything would be possible. Problem is the NHS would never give them all out and noone normal could possibly afford to buy all of them and keep them maintained.

In short anything you get told by the NHS about bringing you back to where you were before you lost your leg if you were in any way active or liked to look remotely nice beforehand is a load of old cobblers.

Right sorry for rambling on. Have two hearings in Jan and Feb at work and so am obviously so stressed about it all I am diong massive work avoidance.

Good luck for 17th.

Fiona

Your ideal list seems the same as mine ( though not so fussed about the pretty).

It is still early days for me, but NHS budget constraints seem to be a big deal it also seams to be a postcode lottery on what will be given out.

My expectation is a good allround Mauch based unit and hopefully a swim leg.

I will have to go private for bells and whistles

Agree 100% with the " all bolox" reference to statement of aim and delivery; same goes for phsio and other rehab issues.

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Wow, thanks for all that info Roz. So glad the fitting is going well. Your posting really made me question the procedure I experienced when having a harmony fitted a few years ago. Certainly food for thought. Read it all to hubby who asked where your centre was, think I noticed you were up north somewhere, way out of my locality unfortunately.

Bad luck on the fall though, hope your stump has a speedy recovery.

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Hi Roz,

Glad things went well but sorry about the fall.

Like Ann I am interested in the difference in the casting procedure.

Did your usual prosthetist cast you or did the Harmony specialist do it?

I think a huge part of a good fit is unfortunately down to luck!

Hope things continue so possitively for you.

Lynne

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Hi Lynne!

The Harmony consultant did the casting.

As I mentioned, the cast was done over the polyurethane liner, which was protected with clingfilm, and with a thin sock over the clingfilm with a roll of spare material at the end to create space at the end of the cast.

For the cast, the consultant firstly put some folded wet plaster strip over my tibia and round the back of my fibula, and he held it in tight behind the back of my fibula while it set. Then he did the usual casting thing - wrapping wet plaster bandages around my stump, over the top of the first plaster section which covered my tib and fib. Then it was on with the big rubbery sock and the suction pump, and a negative pressure was maintained until the cast had set.

I'd been told that even some non-supracondylar sockets can have high-ish sides to support the knee, but the consultant seemed happy that my knee was sufficiently stable to do without them; I was intrigued by the absence of the high sides, which made the socket seem really short, but at least half of my kneecap was covered by the socket.

This led to the first check socket, and to check the fit, the consultant covered my liner with some kind of grease, which instantly revealed any gaps between the liner and the socket as I put my weight into the clear socket. Then, once the fit was seen to be OK, the position for mounting the Harmony pump was determined.

I was intrigued by the way that a little space was left at the end of the cast by he roll of surplus sock, and also that the space was filled later by silicone injected into the check socket; I suppose the cast got the general shape of my stump, and the silicone got the exact contour of my soft tissue at the distal end, but - crucially - the soft tissue was accommodated by the silicone while I was putting my weight into the socket, so the silicone flowed to the exact shape required by my stump while weight-bearing. That clever procedure ensured a perfect total-contact fit and eliminated the last bit of discomfort I was getting; I was surprised that more contact and therefore more upward pressure from my soft tissue actually eliminated the last of the boney pain I was getting at the back of my tibial bone end.

This first check socket with the silicone at the end will lead to the next check socket, which should be virtually perfect, but the fit will be checked again with the grease trick, to see how the liner bears against the inside of the clear check socket. If all goes well with the next check socket, I should leave the same day with a new Harmony leg...

I just can't weight for the next appointment, but I still haven't heard from the limb centre when it might be, and the wait is agony!

...but after a few days care following my fall, my stump is fine again, so it's back to the luxury of wearing my old leg for 2 hours a day before it becomes unbearable..!

Best wishes

Roz.

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Roz, that's fascinating! Thanks so much for the detailed description of your casting/fitting session... the liquid silicone step sounds interesting, and so logical. I hope the finished product is every bit as good as you think it will be!

I'm starting to have some minor problems with gaps at my distal end... small gaps, not enough to actually add more leather lining to the socket yet, but they can be annoying by the end of the day.... I'm starting to wonder when/ir I'm ever going to stop shrinking! When that day finally comes, I've been thinking about trying some sort of suction/vacuum system myself... you've just made a really good "pitch" for the Harmony system!

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