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Caper

New to the site, and I have questions

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Hello folks !

I'm new to the site, and was wondering if someone could help with my search for info on custom liners ? I had a motorcycle accident back in Sept 2005 which resulted in a RBK amputation, and my left leg has an IM nail in the tibia. I've been getting around now since May 2006, and I'm on my 4th socket, but I'm having skin issues and blisters since a while now. Here's a description of the problem. My prosthetist says that a custom liner might help with my continuing problem of air pockets within the liner due to a void in my tissue post surgery. I can't get the liner perfectly air tight because of this, and as a result, the skin on the bottom of my leg eventually breaks down due to perspiration from activity and the pulling action of the pin liner. I currently wear an Iceross Synergy Wave pin liner, and I walk with a bk ptb socket attached to a Ceterus Flex foot. I am trying to cure the air pocket issues with clear moldable silicone provided by my prosthetist that I place in the void in my leg that eventually spreads out in shape and attaches itself to the liner after I walk around for a while, but it's difficult to know exactly how much silicone to use, plus it sticks to my fragile skin, posing a threat to the area and potential removal of new skin. My questions are, is there the possibility that Ossur can make me a custom Synergy Wave pin liner ? Also, are there any other options to help me alleviate the air pockets within the liner ? My prosthetist claims that if I can fill in the voids and stop the air pockets, that my skin condition will greatly improve, and my fit will improve as well. I can only walk around for a short time before I feel the liner begin to slip from perspiration, and I have to remove it, clean it off, and start over, usually 6 or more times a day. For several months now, I have been getting painful blisters on the bottom of my leg because of this, and I had to leave everything off for 2 weeks to try and heal up, but the blisters are slowly returning. We have also discussed suction type sockets and the popular elevated vacuum socket, but as with anything else, there is compromise. I try to live an active lifestyle, as I enjoy bodybuilding, Mtn biking, and snowmobiling, and I'd love to get back to doing some regular snowboarding too, but I'm concerned about having a bent knee position for long periods of time and the possibility of losing the vacuum. I like to push myself physically and athletically, which is why I'm concerned about the suction sleeve and it's ability to withstand abuse, but I suppose I should solve this air pocket issue first and go from there.

Well, if anyone can offer some insight on custom liners and different types of suspension, I'd really appreciate it !

Thank You !

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Hi Caper, and welcome to the forum. I'm Higgy, part of the admin,and a left bk since 2002, and I wear the same things you do. I have the Synergy liners, and the Ceterus LP foot as well..

First off, you mention perspiration several times. Sounds like that is an issue, that causes some of the problem. Has anyone mentioned to you about using specific anti-perspirants on your residual limb.. For the first couple of years, and every spring now, I will notice some excessive sweating. I use a roll on antiperspirant, called Certain-Dri that you can get in many places. It's a roll on. You use it at night, after cleaning your stump and then don the leg the next morning. At first, I used it every night, until I notices less sweating and then moved to using it every other day. I only use it on the thigh area, staying away from any pin site and amputation scars on my stump.. (My foot was severed and then reattached before amputation)

Also, due to the pin sites I had, at first, I had sort of the same problems. I had one area that just didn't get the same suction and would get very sore. Being a CNA, I never allowed it to blister badly. Anyway, the prosthetist gave me some small silicone pads that I put over that area against the skin and then, put on my liner. They worked for a while, and then with the shrinking of my limb I found I didn't need them any longer. Would something like that help you possibly, or have you been there, did that?

Is your CP casting a mold of your limb, or does he scan your limb for your sockets? I found my last socket which was scanned is a much better fit, than the hand cast sockets were. I only needed a slight bit of padding to tighten the top edge of my socket.. Are you still fluctuating a lot from morning to night or are you basically staying one size? It took me four years to stop shrinking after all the damage I had.

Have you thought of calling Ossur America's in California and talking with someone there about your situation?

There are many here, in many different types and styles of legs. I'm sure someone may have an answer to the custom made liners..

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Hi, Caper, I lost my left leg BK for the same reason you did and at about the same time. I started out with a pin-lock liner suspension and had good success with it for several years, but like you, I had some issues with sweating (Certain-Dri didn't help very much unfortunately) and overall stump health because of pulling on the skin. When I played golf, I had to take the liner off every three holes to dry it.

Four months ago, I got a new leg that started off with a custom-made Otto Bock poly liner. My leg guy cast my stump in plaster just like he would for a socket and then sent it off to Bock to produce the liner. He added some extra poly material to protect areas that have been vulnerable for me. When the liner arrived, he cast for a socket over the liner, resulting in a socket that perfectly matches the liner with my leg in it. The next part of the solution was an elevated vacuum socket sealed up with a Bock ProFlex sleeve. There are a couple of companies making the vacuum pumps, both manual and electric (I use the Bock Harmony system manual pump) and I don't think it makes much difference the way you go. Vacuum is vacuum.

Now I had to pay for this new leg out of my own pocket, and I've never regretted spending the money. The improvement in my stump health is incredible, I had several deep folds that are actually smoothing themselves out over time. Sweating is still a problem, but much less so than before. But the biggest improvement was in what they call proprioception, the sensation of knowing where your limb is in space. I could drive a stick shift car before, but was always uncomfortable with the idea, now it's no problem at all. The golf game is improving with the confidence of being able to get my weight shifted to the left side, not worrying about crumpling to the ground as happened a couple of times with the old leg.

The best description I've heard of the difference between the two suspensions is that pin-lock is like holding a hammer upside-down with your fingertips and EV is like holding it normally in your hand. It's a far superior way of connecting a prosthesis to your stump.

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Hi Caper, and welcome to the forum. I'm Higgy, part of the admin,and a left bk since 2002, and I wear the same things you do. I have the Synergy liners, and the Ceterus LP foot as well..

First off, you mention perspiration several times. Sounds like that is an issue, that causes some of the problem. Has anyone mentioned to you about using specific anti-perspirants on your residual limb.. For the first couple of years, and every spring now, I will notice some excessive sweating. I use a roll on antiperspirant, called Certain-Dri that you can get in many places. It's a roll on. You use it at night, after cleaning your stump and then don the leg the next morning. At first, I used it every night, until I notices less sweating and then moved to using it every other day. I only use it on the thigh area, staying away from any pin site and amputation scars on my stump.. (My foot was severed and then reattached before amputation)

Also, due to the pin sites I had, at first, I had sort of the same problems. I had one area that just didn't get the same suction and would get very sore. Being a CNA, I never allowed it to blister badly. Anyway, the prosthetist gave me some small silicone pads that I put over that area against the skin and then, put on my liner. They worked for a while, and then with the shrinking of my limb I found I didn't need them any longer. Would something like that help you possibly, or have you been there, did that?

Is your CP casting a mold of your limb, or does he scan your limb for your sockets? I found my last socket which was scanned is a much better fit, than the hand cast sockets were. I only needed a slight bit of padding to tighten the top edge of my socket.. Are you still fluctuating a lot from morning to night or are you basically staying one size? It took me four years to stop shrinking after all the damage I had.

Have you thought of calling Ossur America's in California and talking with someone there about your situation?

There are many here, in many different types and styles of legs. I'm sure someone may have an answer to the custom made liners..

Hi Higgy ! Thanks for the reply ! So yeah, perspiration is a problem for me as with most. My CP claimis that this is mainly due to the air pockets between my skin and the liner. I have a deep cross shaped void right on the bottom of my leg as a result from the surgeries after my accident. I often wonder if the surgeons forgot to close it up, or did they not expect it to happen, who knows. I thought about revision surgery, but my CP says I'm better off to leave it be and work with it. She believes that more harm could become of it if I were to choose another surgery. Anyway, I've tried a spray on anti perspirant, but never the night before. I found that it left a powdery residue and caused the liner to slip, but again, I haven't tried the process or kind you described. I hear the Certain Dri is a good product, perhaps I'll look into it more. Lately, I've been fluctuating in size because I haven't been able to wear my leg as long, but I've never felt as if my leg was part of me as I hear so often. I find I always seem to need more socks in the lower part of my leg, but not higher up. I also find it difficult to get the pin to fully lock down on the last click whenever I wear multiple socks, as I get pushed up and out of the socket. I can't say I've ever had a very comfortable socket either. I get acute pain in the peroneal nerve if I walk for longer than 5 mins straight, and it seems that no matter what socket I try, it's always there. I obviously have more issues than average. Right now, I just want a good tight fit so I can resume my job at work and get back to doing things I love. It's going on 5 years now, and I thought I would be so much more able than I am......

I already wrote an email to Ossur, asking if a custom Synergy liner would be possible. I'm going to continue trying for now with this silicone application and see if I can find the magic shape I need to cure the air pockets I have, and in the meantime, I hope everyone has a Merry Christmas, and Thanks for reading !

Caper

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Hi Caper. I'm an LBK since April, 2004. I started with the pin system, switched to a suction system then back to the pin for convenience. That was the most painful year. I will never wear a pin system again. It pulls on one spot on the leg (milking is what it's called) every time you take a step. My stump would be almost an inch longer in the evening than it was that morning. You're also using one of the heavier feet. I then switched to a vacuum system. This was a very comfy system, but I had not shrunk all the way so my time in that system was too short. I tried the LimbLogic system this summer, but never could get it right. I used Ossur's 5-seal liner last year and decided that I liked it and would continue with it. It has the convenience of a pin system without the constant pull. It isn't a custom liner though. It is a wave liner. The biggest negative to a suction system is the sleeve. They are very fragile for an active person.

You might try what a buddy of mine does for perspiration. He uses round cotton make-up pads in the bottom of his liner to absorb perspiration. They would need to be changed when saturated. I used non-talc baby powder the first year after losing my leg. It helped a lot with sweat where the anti-perspirants didn't.

It's funny how many remedies there are. It isn't a tried and true lifestyle from one amputee to another. It also isn't cheap to try new products.

Good luck,

Neal

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Thank You very much for the replies and telling me about your experiences. I spoke with my prosthetist yesterday, and we both agreed that it's time that I try something that shouldn't cause the skin irritations I'm having with the pin liner. She said I will always have the challenge of eliminating the air pockets between my skin and the liner no matter what system I use, but at least I know that the pulling action can be eliminated. I don't have many issues anywhere else but on the bottom of my leg, besides the peroneal nerve of course....I'm still waiting to hear back from Ossur with regards to custom liners. I'm hoping that with them being one of the larger prosthetic companies today, that they can provide me with what I need to get back to doing what I love in a more comfortable manner. Life is too short, and I gotta get a move on !

Thanks !

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Caper,

I live on and work on a farm, ride horses, atv's and the motorcycle with Hubby... The farm calls for tractors, wagons, gates, timber, fields and all that the farm implies.....The one postive thing I can tell you is that the Synergy liner will hold up.. The outside might look ratty, but the silicone liner itself will hold up...I put mine through h**l, including weed eating in shorts ( not a bright idea I know) and they have lasted.. The longest one was four years, I believe, before it finally wore out behind the knee.. One thing I have found, if you are wearing the Synergy wave liner, it will wear on the ribs.. The smooth Synergy doesn't tend to do that.. Myself, I didn't notice much difference between how the two fit or flex. Also, the way my socket and fit is, I only use half socks.. The full length ply sock, just doesn't work for me.

As for anti-perspirant.. you will want one that doesn't have a lot of powder in it if you go that route. There are also prescription strength ones that require a doc's script for it.. As Neal says, what works for one, may not work for another.. All we can do is be here to bounce stuff off of for ideas and if we're lucky a solution. You have to do what works for you.. The same with feet..... all you can do is, research, ask questions,and then decide what you think might work the best for what you want to do.

Me, I will/can fluctuate as much as about 7 ply over the course of the day.. One trick I did learn, from my prosthetist, who's wife is an amputee... is to use my diet to help me get a good fit.. If I am doing something where I don't want a lot of ply socks which deteriorates the fit, I will eat something that I know will cause my stump to puff up.. i.e. chinese food, ham, garlic bread, anything that is sort of salty.. Like wise, I stay away from those same foods for a week before a re-casting.. or longer. It is something to bear in mind those as it can change your fit..

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I am a very active RBK. I snowmobile, horse ride, waterski, snow ski, snow board, rock climb, you name it. I have tried a pin system, and would never use it again. For an active amputee, in my opinion like Valk, you should be in an elevated vacuum system. The better proprioception makes a huge difference in whatever sport you are participating in because you don't have to stop and think about where to put your leg. I use a custom Ottobock liner, Ottobock Dermaproflex sleeve, and Ottobock mechanical vacuum pump. The pump actually just came out on the market and is a lot lighter than the previous one. However, with an EV system, the weight really doesn't matter as your prosthetic leg is securely attached to your stump.

I have had a bit of a problem with perspiration as well and have not found anything that works for me yet, but I don't get sores from it. You get sores from it because your leg gets a pistoning action inside the socket due to the nature of the pin system not being a tight fit. The vacuum system actually enhances blood flow to your leg, healing sores and creating the tightest and most secure fit.

Obviously, I would highly recommend an elevated vacuum system whether it be Ottobock or not. However, whatever vacuum system, I would highly recommend that you use the dermaproflex sleeve as it is the most durable sleeve out there right now.

Just my opinion from being an amputee 6 years and trying a bunch of different things.

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Well, it sounds as if the EV system is where I'm headed. I spoke with my CP yesterday, and we're moving in that direction beginning next month. Like I said, I've never felt completely attached to the leg. It always feels sloppy and as if I'm being pushed out of the socket. Just wayyy too much pistoning action for my needs. I hear that the EV system can allow lower trim lines on the socket walls too, so that would greatly help with my needs, especially for Mtn biking and snowmobiling. I was out snowmobiling last week, and I could feel a lot of pressure at the back of the socket from sitting, and of course, my leg was being pulled out of the socket, so perspiration was inevitable as always. Regardless, I kept on as I usually do, but my skin wasn't too happy later that evening. I wear a different leg for snowmobiling because it's lighter. It's called the VariFlex.

Well, Thank You once again everyone, and I hope you all have a safe and Happy Holiday ! Any other stories, experiences, or suggestions, I'm listening, so keep them coming !

Caper

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Well, I've gotten here pretty late...but Hi and Welcome to the Forum, Caper! I'm a LBKA for almost five years now, and I'm still in a pin-lock system. The various vacuum suspensions intrigue me, but even after all this time, I'm continuing to shrink so they're still recommending the pin for me. Maybe some day I'll stabilize..........

It does sound to me that the shape of your residual limb could be the cause of your problems. Anything that creates a gap between stump and liner is a recipe for trouble. I know that, in the beginning, I would shrink out of liners so quickly that, even though my own stump is very nicely liner-shaped, I'd get a lot of slippage and pistoning. As I've reached the point where I can keep a snug fit for several months at a time, I'm feeling more and more like the leg is a viable part of me.

Good luck to you and your prosthetist with your "experiments"... I hope you can find something that gives you everything you want!

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Well, it sounds as if the EV system is where I'm headed. I spoke with my CP yesterday, and we're moving in that direction beginning next month.

You'll turn into as much of an evangelist as the rest of us with an EV system. It's hard to understand the degree of improvement until you actually experience it. Good luck.

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Good luck with the EV system. I definitely recommend getting a custom liner and the OttoBock dermaproflex sleeve.

Your sled looks great. Look up Simmons GenII skis, they make a world of difference!

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Good luck with the EV system. I definitely recommend getting a custom liner and the OttoBock dermaproflex sleeve.

Your sled looks great. Look up Simmons GenII skis, they make a world of difference!

I will certainly mention those to my cp, Thanks for the advice ! Oh btw, I'm running Slydog Race skis on that sled in the pic. They really help with floatation because they're wider than stock (lighter too), and the aggressive keel helps steer better too. What sled are you riding, stubby ?

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I run a Skidoo 1000 and a 2004 Skidoo Rev 800. I take my wife and my dad out, so I ride both of the sleds. I put Simmons GenII skis on because they are wider and help with flotation. I find that they also help with overall control too. I will have to check out the slydog skis, I am not familiar with those.

Let me know if you have any questions about the EV system, I am more than happy to answer any that I can.

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