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cherylm

OK, maybe I should have posted this under "Prosthetics"...but

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I've been spending a rather long and frustrating time trying to be fit for an elevated vacuum assisted support socket. I'm surprised that I'm still hanging in there and trying to make this work, since I've had more setbacks than any amp needs! However, when the leg is working, it feels sooooooo darned good that I keep at it....perhaps I'm simply a stubborn fool....... :rolleyes:

So the last version of a test socket and a new custom-fit liner has made a huge improvement in trying to get this system to work. I've only had a small issue with the vacuum pump (it runs on, and on, and on, rather loudly, making it sound like I'm traveling in the constant company of an electric razor) and a socket that still needs adjusting to keep me from looking bowlegged on my left side. I've been walking well enough that I spent last Friday out walking my poor remaining foot off, and the new leg didn't even try to eat me! It was just grand!

Until, that is, my new leg started to squeak. Step-buzz-squeak, step-buzz-squeak, step-buzz-squeak..........really irritating, and a little bit ominous. "Thank goodness I have a check-up scheduled for Monday," I told myself. "I'll just try to limit my walking until then." Which I did, and things felt pretty sturdy—if very noisy—until Monday afternoon when I set out for my CPO's office. Step-buzz-squeak, step-buzz-squeak, step-buzz-squeak......I was running a little late, so I was walking pretty fast when I got out of the car and headed for the office building's front door................

And then I was suddenly VERY SHORT. Step-buzz-squeak-CRACK, and my connecter, pylon, pump, ankle and foot went one way, while the socket and I took a different path. I probably wouldn't find this so amusing if I hadn't been someplace where I knew I could be put back together quickly or if I hadn't decided to take my walker to this appointment, so I had something to hold on to for balance as I landed flat on the base of the socket. As it was, though, it was rather nice to have the base of the socket to stand on in the middle of the parking lot, with the rest of my leg in disarray around me!

Meanwhile, my CPO was in the office calling me. "Did you remember that you have an appointment today? Are you on the way? If you're NOT on the way, please call us and let us know what's up...." While he was leaving that message on my home phone, I was calling the office on my cell phone: "Hi, it's me. I'm here for my appointment. However, I'm currently sitting in the middle of your parking lot because MY LEG JUST BROKE APART."

And they came and rescued me, so I didn't have to crawl in to the office....and they retrieved my old pin-lock socket from my car (thank goodness I hadn't cleaned out the car recently) and loaned me a liner with a pin...and they stuck the foot, ankle, pylon, etc. back on the old socket...and on Wednesday I go back for TEST SOCKET NUMBER THREE, which we ALL hope will be MUCH sturdier! And, despite all that, I'm STILL looking forward to my having a lovely elevated vacuum suspension leg.....................

If I couldn't laugh, I'd have to cry...... :biggrin::blink::laugh::blush::tongue:

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Cherylm,

Hang in there...nothing beats the vacuum system. I have the same setup with an elevated vacuum pump. The electric one went off ALOT in meetings and I am happy with the system. My legs are so healthy, and if I remember you have had some problems, so this is what you will need.

Take care, Flip

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That, my friend, is why being an amputee is sooooo discouraging. {don't you think}. Normally it takes anywhere from 6 months to {once for me} a year and it still didn't fit. I finally had to write to their Home Office to get any satisfaction. I'm sorry, but there are so many prosthetists that go by the book; not by experience. They simply do not know how to fit a prosthesis correctly. I've had this happen time after time again. I am sorry for the rant, but give me a d@#$% break., when they go to school they are supposed to be professionals in their field.

I'm in a mess again {hitting bottom} and can hardly walk.....of course now I have an open sore. They tell me I am a hard fit.. :mad: .well, what's new.

I am sure I am stepping on alot of toes here, but {you know what} I have finally had it. No more being Ms. Nice Lady.,I remember my hubby telling me to let him talk to them & I wouldn't let him as I knew he had been a Supervisor to long to be very nice. Well, the b..ch is on the warpath. 8 years is way to long not to throw a fit. JMHO

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I don't think you're a hard fir, Eag. They're simply wrong. They just didn't try their hardest to make all the adjustmnents to the socket. Eeven when you finally get to the point you think you got it all 'in the bag', you will still have some tweaking to do.

Personally, I've been sceptical about any vaccum system since I can remember. Maybe I'm biassed here, I don't know, maybe it's just me, maybe it's beacuse I'm an AK and the issues of volume fluctuations. It probably works better for BKs.

Anyways, you hit the nail right on the head here - being an amputee just sucks :sad:

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Cheryl, I think we've all had that sort of story in one form or another, but I must stay.. The "CRACK" that heard is not a sound you will ever forget.. Mine chose to do in the middle of the state fair grounds here in Illinois.. My luck was that hubby was with me, and had noticed the separation where the "crack" emanated from originally.. What I heard from him was this very loud FREEZE..... and everyone in the crowd done just that.. froze.. I don't know if they thought law enforcement was arresting some one or what.. he just didn't want me to take another step on that foot..It was funny afterward, and at the time too actually.. I just knew better than to laugh out loud when Jon was worried about getting me over half a mile back to the car...He ended up getting a wheelchair from the rental tent and they took me to the car free of charge.. They wouldn't take any pay for it, but he tipped the kid nicely anyway...

You were rather more lucky than I was, I had to wait a whole weekend...... :mad: I guess we just need to remember, in a test socket, that's the risk we are taking.... Glad to hear that things are going so well.........Are you coming to conference in June?

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You are every bit entitled to lose your temper EAG - we all do it, and in your case with just cause! Cherlym,Higgy, there is nothing worse than that sinking feeling of complete vulnerability. I was out in my powered wheelchair recently, happily buzzing down the road when one of the wheels just fell off....I luckily didn't tumble out so the embarrassment was confined to being stuck in the middle of the pavement, totally helpless, with everyone crowding around and tutting sympathetically. That feeling of "£$%^& what do I do now??!!" is the WORST. (Having said that, I was rescued by an amazing woman who chatted away to me till help arrived, despite being on her short lunch break). Nothing beats your own two legs....but sometimes the kindness of total strangers is a real eyeopener.

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Wow...lots of opinions here! Ann, I don't think you're being unreasonable at all..."difficult to fit" or not, they certainly should be enough of a professional to listen to you and make adjustments that actually accomplish something. Get in there and give them (expletive deleted) until you get the leg you need! And if you have any degree of choice available in the way of leg guys, I'd also seriously think about checking out some new ones. We do need to stand up for ourselves!

Eldar, my first experience with any sort of "suction-related" system, many moons ago, left me wholly unimpressed. Tried it briefly, didn't like it, went back to my pin-lock/suspension sleeve combo, and was perfectly happy. I tried this new vacuum system simply because I was asked to be a "fit model" for a seminar on casting and fitting for Otto Bock's latest pump. When I stood up in the test socket and they fired up the vacuum, I was astonished at how good it felt! Since I'm coming due for a new socket anyway, this seemed like the ideal time to make the switch. I'm hoping to have the sort of experience that flip reports!

The state fairgrounds, Higgy? You like to do things in a big way, don't you? I can imagine Jon hollering "freeze"...and I'm glad you had the balance to do just that! If it looks like I'll have something resembling a "walkable" leg soon, I'm hoping to make it to Orlando for the conference...with luck I'll have it worked out by the end of May and I'm looking forward to seeing everyone!

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Cheryl, I hope this third test socket will be your last one, but even if it’s not, there’s nothing much to worry about I guess.Precise socket fit is essential but I’m sure you know how it works with all these modifications and tweaks till you get that ideal one.You seem to be a very seasoned and experienced person in this regard..... in other regard, well, I see you’re an enchantingly adorable and nice individual, in fact like many others here on this great site.

As for this suction suspension system, I basiacally had a similar experience to yours. I was once fit with one and it felt damn good too at the beginning. Though again, I’m an AK and the whole system was a bit different as it wasn’t exactly a roll-on liner just being put into a rigid socket but a direct (flexible) contact suction socket ( also called a ‘dynamic suction socket’ I guess) being fit into a hard carbon supportive frame. The whole thing is based on the idea that it should be the most intimate fit possible between the human body and any mechanical ‘thing’. The limb then is in full contact with the socket wall with nothing in between whatsoever. I don’t think they use these direct sockets for below knee amputess.

Like I said it felt great at the beginning but with the a couple of test sockets to go through, the longer I was on that system, the more I could feel it was not for me. One day the leg just fell off just in the middle of a crowded street. That was a real ‘bummer’, to say the least. Can you imagine a 6’2, 220-pound ugly-as-a-mud-fence guy starting to leap and tumble like crazy all of a sudden, trying to prevent himself from hitting the ground, almost like that Jackie Chan? I was on the Rheo knee then but it didn’t help much. I hit the ground like a sack of wet cement. After that I remember I even tried a couple of seal-ins with rings and stuff but apparently I didn’t feel it was any better alternative either. That was basically my last ‘fling’ with the suction any-system. That’s pretty much it.

I’m sure it can work perfecrtly for some AKs and even for more BKs. I wasn’t the one. Then I switched to C-Leg and this old good pin-lock socket , like you’re saying.Oh yeah, ‘walk baby walk like no ever does’. I’ve been on the pin lock since then.

It never fell off and it never will. Well, I mean it could but only together with the stump I guess. I categorically reject such ‘possibility’ though. :biggrin:

Take care Cheryl, and thank you all good people for being here. Whenever I happen to lurk on this forum, I feel real good. I don’t know, it somehow feels like ‘home, just like that.

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Oh, don't just "lurk," Eldar...you express yourself in a delightfully "visual" verbal way! Stick around and share that with us!

I think there's a good many of us out there who think of this forum as some sort of "home" and our fellow members as our amp "family." Our real-world families (unless they happen to also be missing a limb or two) just can't fully grasp all the things that do (or don't) matter in the world of amp-dom. They may be loving, supportive, dear and fine human beings...but it's still awfully good to be able to "talk" to someone who can understand all you're telling them, because they've been through it themselves.

Heavens, I'm so glad this place is up and running again! :biggrin:

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Cherylm, I agree....I really have missed the people who helped me @ the beginning of my amp. journey. And Eldar, we certainly do enjoy the way you express yourself. Welcome to our family.

I am also glad several more have jumped back into our original family. :rolleyes:

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That, my friend, is why being an amputee is sooooo discouraging. {don't you think}. Normally it takes anywhere from 6 months to {once for me} a year and it still didn't fit. I finally had to write to their Home Office to get any satisfaction. I'm sorry, but there are so many prosthetists that go by the book; not by experience. They simply do not know how to fit a prosthesis correctly. I've had this happen time after time again. I am sorry for the rant, but give me a d@#$% break., when they go to school they are supposed to be professionals in their field.

I'm in a mess again {hitting bottom} and can hardly walk.....of course now I have an open sore. They tell me I am a hard fit.. :mad: .well, what's new.

I am sure I am stepping on alot of toes here, but {you know what} I have finally had it. No more being Ms. Nice Lady.,I remember my hubby telling me to let him talk to them & I wouldn't let him as I knew he had been a Supervisor to long to be very nice. Well, the B..ch is on the warpath. 8 years is way to long not to throw a fit. JMHO

Ann, I'm sure that you know I'm not making light of your situation.. How many times have we had "discussion's" on this.. Why is it, they always say that we are "hard to fit" when we know what it's like to have a good fit? Sometimes, I think they just take the cheap route.

Is this the different prosthetist that made the good socket? There is nothing wrong with being on the warpath when it is called for. You go, woman!

Let us know what they outcome is.. at least, email me and keep me updated ok?

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Thank you Eag for your kind words. I'm sorry if it was too 'graphic' on my part but I like you liked it. :tongue:

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Thank you Eag for your kind words. I'm sorry if it was too 'graphic' on my part but I like you liked it. :tongue:

No way was it too graphic...we are very honest on this forum...just glad you are expressing yourself and feel the family touch we have on here. :wink:

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That, my friend, is why being an amputee is sooooo discouraging. {don't you think}. Normally it takes anywhere from 6 months to {once for me} a year and it still didn't fit. I finally had to write to their Home Office to get any satisfaction. I'm sorry, but there are so many prosthetists that go by the book; not by experience. They simply do not know how to fit a prosthesis correctly. I've had this happen time after time again. I am sorry for the rant, but give me a d@#$% break., when they go to school they are supposed to be professionals in their field.

I'm in a mess again {hitting bottom} and can hardly walk.....of course now I have an open sore. They tell me I am a hard fit.. :mad: .well, what's new.

I am sure I am stepping on alot of toes here, but {you know what} I have finally had it. No more being Ms. Nice Lady.,I remember my hubby telling me to let him talk to them & I wouldn't let him as I knew he had been a Supervisor to long to be very nice. Well, the B..ch is on the warpath. 8 years is way to long not to throw a fit. JMHO

Ann, I'm sure that you know I'm not making light of your situation.. How many times have we had "discussion's" on this.. Why is it, they always say that we are "hard to fit" when we know what it's like to have a good fit? Sometimes, I think they just take the cheap route.

Is this the different prosthetist that made the good socket? There is nothing wrong with being on the warpath when it is called for. You go, woman!

Let us know what they outcome is.. at least, email me and keep me updated ok?

Yes it is..after all those years dealing with idiots, I finally found someone who was really good. Problem: he opened two more offices and spread himself too thin therefore hiring others to fill in...then I lost the last guy {no notice, no anything until I went into the office to find he had left}. Now we have someone from elsewhere who is in 2 days a week {working temp}. I was absolutely ready to explode & finally came and ranted. Had to., and yes you have been my "knight" in shining armor" so to say, showing me the side roads every amp. has to take to survive. I will be OK & know we have to hang in there...if this doesn't work, I will be on the road to find someone else. I wil hound them to death until it works!!!

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I was just fit with a new socket with a new 25 electronic vac pressure. The battery lasts for two months before it has to be recharged. The liner was custom made by Otto Bock and is much thinner than the off the shelf ones from the past. The cool thing about the sock sheath is that it has a silicon ring on it about 7 inches up. So not only do I have elevated vacuum, but I also have a seal from the sock. It's made by Aura and I'd like to ask if anyone else has this. If so, what is the durability like?

I have been on vac for 4 years now. I was due for a new foot as well. I trialed the Triton with rotation and shock absorption and ended up keeping it. It's a lot like my Freedom AT-Renegade but with the extras as mentioned.

I know it's hard but hang in there. I'm sure your CPO will get it just right,

KB

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Well, I've been upgraded from a "check" socket to a "trial" socket...and I think we may be getting really close to working this whole vacuum-assist business out. KB, I'm also in a custom-fit Otto Bock liner...gosh I wish I'd made more of a fuss about getting a custom liner in the past! I've always "sort'a, kind'a fit" in an off-the-shelf liner until the vacuum entered my life...and even then the initial attempt was to use the off-the-shelf liner that "sort'a kind'a" fit. That's the liner that tried to eat me alive.

The custom fit liner is actually longer and heavier (overall) than my previous liners, but it fits sooooo beautifully that I don't even really notice it! I don't know if it's the same type of liner you have...there is a very, very thin and narrow "ring" around the liner, but the pictures I've seen of other "ringed" liners look like the rings are much more prominent than mine is. And my pump is still coming on often enough that I'm not sure how long the battery is actually supposed to last...at this point, I'm still plugging in the charger every night. :unsure:

I hope we all manage to get limbs that will make it easier to get around!

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Glad you're close to a good fit. I will post a picture of the ring sock that I have. My leg man is making me a liner with an escape for sweat since it's summer now and I am fairly active. I will let you know how it goes and send pics. I have an escape hose that goes down to my ankle where the vacuum will allow sweat to be passed through to the ground. I know it sounds a bit gross but I will see how it works.

Good luck and hang in there!!

Kirk

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Since we're on the sockets, I thought I'd post the picture of mine here, just to share the thoughts I've been having about it. It's a pin lock socket made out of carbon fibre, like they all are, I guess.The brim is padded with soft foam, nothing 'fancy' :cool: The liner is Iceross Transfemoral (Ossur). I've been wearing this socket since 2009.

As far as fitting goes, I think I should consider myself reatively lucky as my leg guy basiacally hit a home run right away with the first test socket (with the only difference it was after I dumped my first CPO). I can't really blame the guy, he was a nice person. Well, they're all nice and decent, I'm just saying, you know. But somehow he just couldn't get it right with a good fit no matter how hard he tried.

Problems:
Daily volume loss is not a big deal. No pistoning, no turning arround. The only problem I see is drastic (and rapid) weight gain. Here again I'm a lucky B.....D I guess. Thank God I 've been able to control my weight to maintain a comfortable fitting till this very moment and I don't think I'll become Chris Christie ( no disrespect intended :tongue: ) anytime soon. I'm sorry. I'm a pictographic speaker. I always picture words when I speak or write.

As for this 'hard-to-fit' notion; with hindsight it's now clear to me it pretty much looks like once we're on the warpath against our prosthetists we're already 'guilty until we prove oureselves innocent' . That should be translated as something like " Oh yeah, now you got it right, now you're talking..". , that what you're saying to your leg guy after five test sockets .., and now I'm a 'good fit' , right?

Yep, that's about it. God bless you all.

post-2353-0-72343700-1369857759_thumb.jp

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Here is the seal/sock that I use inside my elevated vacuum socket. This allows me to have a seal line at different heights within the socket, as well as the vacuum hold below the seal line. This combo is the best that my leg man and I have found thus far and my prosthesis feels a few pounds lighter because of it.

Kirk

post-2495-0-36618800-1369934469_thumb.jp

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Hi, Gang...I have good news and bad news. The Good: The custom liner is a smashing success, and we're moving ahead on the leg front. I've had NO more blisters or tearing skin...in fact, the leg is feeling awfully good. However, it appears that I'm still looking forward to one more (hopefully FINAL) round of casting, check socket, tweaking, test socket, more tweaking, trial period, and then A FINAL LEG!

This is more time than I've ever spent in getting a leg built (after my very first leg, that is...that one took five months). It's making some good-sized impositions on my lifestyle...but so far I think it's worth all the time and effort. I'm feeling so stable in this latest version of a test socket...and I can walk and actually enjoy the act of walking again. The "leg team" keeps saying that they can still improve on the socket, and so far they've kept that promise.

Only complaints now are 1) the time issue for constructions/revisions, 2) the time it takes to don the leg (getting better, but it's still about 15 minutes), and 3) my current pump, which behaves quite nicely but is also quite noisy. They may be able to improve on that, but I'm now one of those folks who has to worry about build height. Some of the other, quieter pumps they've tried are just large enough to not work with my flexible ankle...and NOTHING is going to make me want to give up my ankle!

The Bad: I'm giving up on making it to the conference this year. (Sigh.................) All the various castings, fittings, tweakings, and meetings with the ever-growing "leg team" are just too uncertain, and the airfares are growing ever more unaffordable, with most of them requiring that I take a "red-eye" out of San Francisco with at least one or two plane changes in the mix. So those of you who ARE attending, please take and post many pictures....I'll see you next time around!

So that's the latest........here's hoping for continued progress!

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Here is the seal/sock that I use inside my elevated vacuum socket. This allows me to have a seal line at different heights within the socket, as well as the vacuum hold below the seal line. This combo is the best that my leg man and I have found thus far and my prosthesis feels a few pounds lighter because of it.

Kirk

Here is the seal/sock that I use inside my elevated vacuum socket. This allows me to have a seal line at different heights within the socket, as well as the vacuum hold below the seal line. This combo is the best that my leg man and I have found thus far and my prosthesis feels a few pounds lighter because of it.

Kirk

That looks like the seal/sock they are trying on me...but I'm not using the vacuum with it. It had a hand pump. I was having trouble with the sock loosing suction so they are having me use a sleeve over it. {I don't like that} binds up my knee too much. I will check and find out who made my seal socks. Thanks for picture. ann

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I love my vac system. Can't image it taking 15 minutes to get on. Some monistat gel on the limb, spray some alcohol in the liner and voila, it's on. And it doesn't make any noise.

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Marcia, I hope I'll keep improving on the donning time...at first, it took me a full half hour! I kept forgetting steps, remembering them, and then having to take it all off and start over again.............and I'll hope for a quieter pump in my future as well!

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I love my vac system. Can't image it taking 15 minutes to get on. Some monistat gel on the limb, spray some alcohol in the liner and voila, it's on. And it doesn't make any noise.

Mmarie, you use a hand pump with yours too, don't you.......

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