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Wendy

I need some information

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Hi there! I've been an amputee for 8 years - I've had the iceross liner with pin. I've had little luck with comfort but have pushed myself and been very active, and have been doing a lot of things. However each time I go through the process of getting a leg it takes 8 to 10 sockets to get this moderate comfort. I decided after mant consults to have reconstruction surgery, this was last june. I started in July trying again to get a fit - I've had at least 30 to 40 sockets made and no luck - needless to say I'm bruised and weary. This past week they decided to do two types the old one and one called a suction socket - they made six sockets this past week :( not a good week) I'm home for the weekend and have to be back Monday am - it's a four hour drive to the rehab from my home. My question is - does anyone have this suction socket - how does it feel - this rubber liner that rolls up over the prosthesis and your leg - is it hot, how does it feel when your knee is bent (especially for a long drive or sitting a long time), does it feel secure when walking. I'm so weary I don't know what to do - this week I thought this new type might work but it was so painful to walk. I hope someone can give me some feedback from their experince or pass on info they may have. Thanks for taking the time to read this message :) . Weary in Canada - Wendy

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Hi Wendy,

Although I can't answer any of your questions yet, I thought I'd tell you that I'm in a similar situation. I gave back my pin system legs (as they were so uncomfortable) and should get my suction socket legs next week (or week after if there are any problems). I believe that rubber thing you mentioned is called a suspension sleeve. And it really is made of rubber, isn't it? Not like the other elasticky type sleeves I've used previously.

I am worried about exactly the same things as you too, ie. heat, sweat, how it feels on the backs of the knees, etc. I understand that the new Ice-Ross Seal-In Liner would erradicate the need for the suspension sleeve, as it does what it says, seals in itself. I want one, but I've been told to wait till after May. However, I know of one amputee who has the same system (suction) and uses the Ice-Ross Seal-in Liner but still uses a suspension sleeve anyway to feel more secure.

I'm looking forward to reading your replies. I know that Brenda uses a suction system, maybe she'll know.

Thunder.........Thunder............THUNDERCATS............Whoa!!!!

I've just called her. Let's wait and see!!

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Wendy,

I use a vacuum system which is simular to the suction. The sleeve you are talking about (or at least it seems like the on I have) is made of urathane. It isn't to bad as far as heat unless I'm running then the sweat starts to forum under mine. I am in the process of trying to figure out how to minimize that during running. As for the knee bending I get about 90% bend out of my knee it's very comfortable and I feel very secure in the socket. My sleeve is TEC ProLink by TEC interface systems which was bought out by otto bock.

Sounds like it's the socket itself that you're having problems with. Sometimes it's hard to get a good fitting socket and as long as they are still making you check sockets I would keep at it. Or if you can find a new prosthetist that can help you.. You know it's ok to fire your leggist if they are not providing you with a usable leg and driving the distance all the time is time consuming.

I don't know how much help this is but I hope you can work it out.

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I've had iceross as well and absolutley hated it

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Hi Wendy... I am from Canada too.... Oshawa area.. and yourself?

I used to go to west park Hospital in Toronto... they tried to put me on the suction socket... but then choose to go with the dry sock system. It too has the liner that goes over your prost, sitting bent in a car for a bit really no that bad... however on a really hot day I found that the sleeve was not that secure... it would slipp down.

I bow go to Design Prostetic In oshawa.. a really great place. They put me on the Gel liner Pin system... seems to be working for me right now.

Where do you go for fitting ects?

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Wendy--

I have the pin system also. Kind of a pain to keep switching socks during the day but the comfort is great. I've been told that will diminish as my stump shrinks since I've only had surgery in August. I'm sorry that you've been having so many problems. Good luck with things and try to keep a positive attitude!!

Caroln

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Hey all - thanks for your replys :) Sounds like the pin system has been a problem for a few. Brenda what is the main difference between your system the vacuum system and the suction socket. On Friday my prosthetist brought in a co worker to see if he could help - she has also had the head of the department of Orthotics and prosthetics helping the last several times I was there! I think I'm running out of personel???????? Hey Kuftz - I go to Halifax, Nova Scotia the only place in our province. I'm not sure how hard it is to go out of province - there would be a lot of paper work to get covered - worth it however if i don't make any headway here. Could you explain the dry sock system. I was afraid of this suction socket because of the sleeve - but to be honest I'm at the point that whatever gives me the quality of life i want I'll just go for it. The main problem i'm having with this new type is it feels like a tight ring just below the back of my knee - they say it's not a problem easily fixed???????? Thanks again for your replys - Wendy

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Hi Wendy,

I've got an Iceross Pin System on a Flex Foot for adjustable heel height and its fab I've had no problems at all with it. I've also got the new Iceross Seal In Liner (Suction) with a leg / foot for water use. The liner is great - its thinner, its light weight and the suction seals you into the socket - its very comfortable. There is a very small valve to release the seal to let you out of the socket. For me, it didn't feel like a liner when I put it on - it was so light and comfy too.

Sue - Cardiff - UK :rolleyes:

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Wendy,

I'm not familure with the suction socket. The Vacuum pretty much you put the leg on and with action on the foot you vacuum out the air.. TEC Harmony is call the VASS harmony by otto bock. I used that system until my Prosthetist developed my system which I can't at this time talk about but as soon as I'm given the go will post an explaination.

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Wendy,

Could you please tell me if they have you standing or sitting when they cast your sockets. The problem is that if they do it when you are sitting the little limb will be a different shape to when you are standing. Just a thought.

Best regards,

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Hi Wendy,

You sound like me! I can't count how many check sockets they've made me. I have managed to work with the set I've been wearing(for the last 15 yrs!!!) in order to have an active life, but lately my skin is in constant breakdown. I'm a bilateral BK & sometimes we just make one new type at a time. If that works then we'd make the other. I tried the pin & hated it. I couldn't stand the distal pull. I've been an amputee for 22 years & back in the day I had a revision done on one leg in the hopes of getting a better fit. Good idea at the time, but......they took away all the boney spurs & the leg is too pointy without any areas to bear weight on. Anyway, I also tried the Harmony. There's a lot of hassle with it. It is heavy, but it doesn't feel that heavy when you're walking. Just when I was sitting & tried to lift my leg.The idea is great, but I think they have a few kinks to work out in order to perfect it. Probably more suitable for just one. I drive without any added controls in the car & just could'nt imagine holding up this much weight for long periods. Or God forbid, what if I was moving from the gas to break & it being so heavy I wouldn't be quick enough. :o I also think that the length of your stump has a lot to do with it. Mine are pretty short.

I just got cast for the Seal in sockets. I have an appt. tomorrow. Got my fingers crossed. I want to have a decent summer. My boys want to take a vacation & I would enjoy a pain free one!

I'll kjeep you posted.

Linda

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Johnny,

Good suggestion! It would make more sense to cast you while standing. You're muscles & tissues would be in a much more accurate casting position. I've never had it done that way. Have you?

Linda

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Hi Linda,

I have been asked to sit and hold my leg straight out when I am being cast to simulate my leg when I stand. I'm not sure if that provides the same end result as if you wer actually standing, but it seems to be the way that it has been done for me most of the time.

Regards,

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When I get casted for a socket and I've been doing it this way for hmmmmmmmmm 30 something years.. I sit in a chair they use a big elastic band that they wrap around my waist and use clamps to clamp it on the socks they have on my stump then with my knee in a slightly bent position they cast me with plaster. Hope this makes sense to you!!

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:) Hey everyone - once again thanks for all the replys. Ijust arrived home from rehab - ( a dozen roses were waiting for me from my husband - can't tell how much I needed that today) - don't have my leg yet - it's still in check socket form, they are going to leave it in the same clear material only thicker so it will be safe to take home and try. I have made some progress but am very briused and sore so it was hard to tell today if we are there?????? my leg has a lot of loose, flabby tissue and never goes in the same place when putting my liner on - this is the problem with the iceross pin system they call it milking the stump and I guess it's severe because of all this unattached tisse.This is what I was supposed to have had fixed last June when I had the reconstructive surgery, but it's not any different - they will continue to try to work with the tissue this way - I can't face doing another surgery right now - mentally or financially - I need to get back to work.

In regards to the casting I am always sitting down with my leg slightly bent. Brenda that process of casting really makes since - i'd like to tell my prosthetist about it - it may help. Where do they put the clamps - front to back or on the sides? The leg they are making is according to them the vacuum sytem and from what you said Brenda, it sounds the same - last time they called it a suction socket so I guess they are one in the same. When they cast me this time they wrapped my leg very tight to hold the tissue in place. I return in a week or so for another round - I need some time to heal. It means a lot to hear from everyone - thanks for taking the time to care. Best to all :) Wendy

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Hi Wendy, sounds like you are getting there, all be it slowly. Hang on in there, it will be worth it. I have just had my socket padded, my limb has shrunk so much it was far to big and i looked like i was limping when i walked. It is a lot better now, it took the prosthetist nearly 2 hours to get it right. I have to go back again in 6 weeks, they say my stump will shrink even more.

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Hi Wendy-I have the exact same problem as you in terms of loose muscle tissue so I know exactly what you are going through trying to get a good fit. The way Brenda describes casting is from what I can see sitting down and therefore impossible in your circumstances to get a true impression of your residual limb when you are walking. I had to INSIST on being cast stood up as Johnny has suggested to get anywhere near a comfortable fit. The socket system being described and usually with the pin liners these days is the Patella Tendon Bearing type. This means that the majority of your weight is placed on the tougher tendons at the back of the knee and just beneath your kneecap at the front, so lessening the 'pistoning' of the limb in the socket, although it is still a prob when putting the leg on. I have ended up with the PTB socket, a urethane liner and pin which has been cast snugly but not too tightly round the top, but you have to be wary of if the prosthetist attempts to dig in thumbs or fingers too much when casting as it will usually end up as a nightmare socket, as I find the shape of my limb changes when I bend my knee and tendons contract anyway. In addition I use a neoprene sleeve which gives additional support and this mostly came about because I horseride and can well do without my leg dropping off half way down a wooded bridlepath :lol: and it seems to work better generally so I sort of have the best of both worlds.

There is a knack to lining up the pin as you don the liner if your muscle tissue is loose like this too or it is very painful, but with practice you'll find it easier even if you have to take it off again 2 or 3 times to get it right.

Incidentally, being quite a technically minded person I've thought of one or two really good ideas for alternative socket technologies for peeps in this particularly boat, but it's proving quite difficult to get the extra info and materials to try 'em out :huh:

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Hi Meggy & Crazzy 1 - thanks for the words of encouragement Meggy - it really is the first time in this past year that I feel we are even a little close :D - I am a very optimistic person and always give it my all - it's just ends up taking a lot out of you.

Crazzy 1 - have you ever had reconstructive surgery to tighten this loose tissue? I'm told if it's done right it will work very well - key being done right I guess! Do you think that the tisse would be pulled up into a half decent position the way Brenda described - it would be better than the tissue hanging down towards the back when casting - it sounds like it would pull it up and forward over the bone. i don't seem to be able to take any pressure on my tendons - they had to push out in this area a lot. I don't know if the pain I have in the back - on my calf muscle is just something I need to toughen up to or if the pressure back there is to much - they tell I may have to wait and see if i toughen up -but I know I'll be going through a lot of discomfort to find out :( .

I went horse back riding once - I really enjoyed it - mind you I didn't go to far.

I met a guy at rehab who was trying to get some materials also - he had the same results as you - no luck. Does your prothetist listen to your ideas?

Sue did you have to pay for your water leg - My insurance won't cover it - not deemed a necessity - how does it feel to swim with?

See ya! :) Wendy

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Hi again Wendy-unfortunately the casting straps (or whatever they're called), serve only as a means of holding the sock in place which they then mark around areas like the patella, end of tib etc. before slapping the plaster on. I've had a cast done like it several times and I can honestly say it makes no difference to how the tissue hangs :lol: If anything, it just draws the muscle tissue back which as you have probably found with many of the checks made from a sitdown cast creates what I describe as a 'shelf' in the socket where the end of your tibia will then be very prone to bottoming out on which is TRES painful.

I did have reconstructive 3 years after the original amp. and about 12 yrs ago from now, but if anything the stump shape is worse not better and did nothing for the looseness of the tissue. I have been told I could have another op, and have been told that what should have happened was the tissue should be wrapped tightly forward and sorta stitched to the bone-UGGHHH. BUT there is no way I can afford to be laid up again at the moment with my children the ages they are and having four gee-gees of my own to look after-besides, at the moment I can at least walk even though I know it's not perfect if I am persistent enough with the way they make my sockets. I don't sufficiently trust the surgeons round here to keep it that way post-op unfortunately :(

If you are experiencing a lot of pain with any weight-bearing on the calf tissue that will continue as long as they cast sockets like it. I have always found that it will only distort and cause horrible cramping and pain as the muscle just tends to get twisted about all over the show. The PTB is quite hard to get used to and can be quite sore at first, but in my experience is the lesser of two evils in this situation but it can work even if it has to be sort of 'bastardised' to get the right level of comfort for you. Perhaps if you get them to cast with an extra sock over the liner it might help as it would give you more room to 'pad out' with socks while still allowing weight bearing in the least sensitive areas, even if it's only for the first few months then maybe progress onto a snugger socket.

I have also tried a pressure casting which was a complete disaster as it squashed my stump into a really long skinny sausage and the subsequent socket was impossible to get into as I couldn't get the pin far enough in to start to get hold and fiddle about stretching the tissue down to get it on-not nice. Besides it's supposed to only be used for a total weight-bearing socket where weight is dispersed all over stump at equal pressure which doesn't seem to work either in my case.

I hope some of this waffle ^^^^^ is some use to you, but will keep thinking of more suggestions to help :)

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PS.

Forgot to answer about whether prosthetist listens to my ideas-you must be kidding, plus I wouldn't trust him not to nick them for himself-it's like butting your head against a brick wall here in the jolly old UK.

Will persevere with the materials thing tho', but it seems like a kind of 'closed shop' attitude doesn't it where they like to keep the materials technology on a 'need to know' basis. On a more positive note-above knee amps who have benefited from the knee system where it can be locked for standing and unlocked for sitting was courtesy of an engineer who's daughter happened to be an AK here in the UK and got sick of seeing her struggle with the rubbish they were churning out at the time et voila, he designed a system which most AK's went on to use for some years here. They do say necessity is the mother of invention don't they???? ;)

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Hey crazzy1 - thanks for the information - WOW could I relate to a lot of what you said - it was a great help. I must say the two prothetists I've worked with have always listened to me and tried some of what I wanted to try - and if they didn't they explained in detail why it wouldn't work. i'm really gratfull that they listen.

thanks again! :) Wendy

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Hi Wendy,

It went pretty good. This might actually be the set that works!!!! Originally, you were asking about a suction socket & it sounded like you were describing the Harmony. You roll up a liner much like the ones used with the pin. First they said to put an ointment on like A&D it helps with the suction. Then you put on the leg & roll a suspension sleeve over it. I didn't want that grease & it was going to be hard to put it on with all that **** on your hands & then how was I gonna wash it all off before I went to bed? Besides it was really heavy. I have heard alot about people liking it. Then again they were single BKs.

So back to your ? I saw the Seal-In-liner in an ad. You put on a liner, again like the pin one minus the pin. It has a little rubber thing around the middle of your leg. Put your leg into the socket, pump up & down a bit & you're off! :D No grease either.That rubber thing makes a suction & you don't need suspension sleeves!!!!!!!!!! It was the most comfortable leg I've felt. Sure it has a few kinks, but still the best so far! yippie yippie yahoooooie!!!!

Like I said before, he likes to make one leg at a time to see if I like it. So, on Thursday I'll go back & hopefully try both. I'm also trying out a new foot, the Renegade. It has a nice push off the toe, but is much more spongier than I'm used to. Maybe if I have two of the same feet on I can tell better. I say try it!

Linda

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But Sanicki, I like suspension sleeves 'cos they stop your leg flapping in the breeze so much-us wobbly legs have really POO proprioception. Plus it hides all the socktops AND the disgusting green they insist on making the Alpha liner in-UHH hideous, so NOT a match for the rest of me <_<

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Hi Linda - Glad to hear your appointment went well getting two must be a challenge and a half. My prothetist mentioned that rubber ring though he made it sound it was some time in the future that it would be reday to try???????????? I'll have to ask when I go back. As for cream they told me just to put some vaseline on any spot I felt a pull on my skin, but putting the nylon sheath inside the liner made a big difference though I didn't walk any great distance with it - time will tell I guess. Linda are you in the UK? Asking to see where this ring is being used as I said before it doesn't sound like it's here in Canada.

Crazy 1 - I never saw anything in the color green - blue yes. I would love to know how many females are involved in the design of all these things because esthetics seems to be WAY WAY down on the list!!!! Best to all :D Wendy

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