Several new legs, all miserably painful

[heckinohio]

I lost my lower left leg to a crushing injury necessitating the whole of the remaining crushed area to be grafted. I have had as many as 6 legs since July '012. All have been extremely uncomfortable & almost unusable. I have miserable discomfort every time I get up from sitting.......takes several minutes of limping w/a cane before I can over come these sensations. The end of my amputation is so sensitive that I cant stand to touch it, it does not touch the bottom of my cup.

During Sept, after several different legs, I ended up with a lesion on my lower shin, not unlike a water blister one might get from shoveling or raking, a straight sided crater w/no blood. Took 2months to grow back under wound care physicians treatment. Now, everytime I put my leg on, it comes off leaving a re-opened lesion. I am on my walker for several days before I dare put it back on.

I am using an Alpha liner, have different thickness for different size cups.

Anyone else here have a grafted amputation in a prosthesis cup?? Have you encountered any of these problems???

Anyone care to comment???

Donna Heck

[ann-]

Hello again Donna,
I replied to you, I think on the 'Intro' page, but like you had an accident, probably similar injury and have also got skin grafting.

I wasn't quite sure what you mean by a 'prosthesis cup', though like you I am using an Alpha Liner, but I only have one thickness of liner, which is pretty thick, generally it does its job pretty well, though a lot does depend on the fit of the socket itself.

I wasn't sure if by 'cups' you meant the actual socket, or if you are using 'cups' between the liner and the socket to protect or cushion the end of the leg, as I have seen that sort of things used on other people.

The lower shin area is a pretty common area for below knee amps to get lesions on, because even without skin grafts there is very little flesh, unfortunately the fragility of the graft often makes it more open to being rubbed and I have had my fair share of them over the years. So do understand how sensitive it makes the end of the leg feel, how painful it can be and how miserable it makes you feel.

Its a bit difficult to comment because its different for everyone, and there are different reasons for the problems each person might have,plus I've had mine so long I tend to do things by instinct rather than what I am told, but for me if I have even the merest hint of a rub or lesion on the grafted area, i just don't wear the prosthesis at all. Sensations are one thing, and if it was just sensations then I would probably just gently build up the tolerance of wearing the prosthesis, but if it is breaking down the skin then you probably need to rest your stump and get the stump and the prosthesis looked at.

I was wondering if after the lesion that took two months to heal, did they refit your socket? if they didn't it maybe that the socket isn't fitting well in that area, or perhaps might not be fitting in another area and putting pressure in the spot where the lesion is. So in that case I would be asking for a socket re-make. But f they did re-make the socket, maybe it still needs some adjustment. So do go back to the prosthetist and ask if they can adjust this.

Some years ago, I had a couple occasions where, like yours, rubs have turned into ulcer like wounds and like yours, would re-open when I started re-wearing the leg. mine did eventually heal, but on both occasions it resulted in me having to wear a different type of prosthesis where I took weight in a different place, so, if you are having this happen every time you put on the prosthesis, it might be worth having a discussion with your prosthetist about, perhaps, a different type of prosthesis, where you bear weight differently.

The other option, which you probably won't want to think about at the moment, when you are just beginning to get walking, is, if the there isn't an option of a different type of prosthesis, or if the leg is not improving than ask to be referred back to a plastic surgeon, to see if they can make it any less problematic.

Not sure if my comments have helped, but I have had very similar problems and have managed to find ways around them, so do stick with it and don't give up on things, keep talking to your prosthetist to find ways they can perhaps adapt the prosthesis so it doesn't rub, or perhaps talk to your doctors to see if they can find ways round this to help you.

[allenuk]

Six is a lot. I had 3 in my first six months, which isn't uncommon - and mine was an elective amputation, slow and easy, unlike your traumatic troubles.

What I'm saying is this, I suppose. Be patient (I really do know how hard that is, and how easy it is for me to say), as your leg will settle down. I'm not a medic, but it might mean that you have to stay off your wounded leg for a while, anything up to 6 weeks, as it sounds as if you might be getting into a prosthesis before your leg is ready. Having 3 legs between July and September sounds as if they tried to get you into a leg too quickly.

What does your leg consultant say about your problems?

A.

[heckinohio]

Sorry so much time has gone between my first comment & this reply. I am still struggling with the lesion on my amputated leg..... Being relatively new to this, I find I do not have a full grasp of the terms associated with being a prosthesis user. My 'cup' comment means the socket My Alpha liner is 9mm (extra thick) at the lower front, thinner at the back side & seems to taper to less thickness at the top. I have shortened it as I am very short & it comes almost to my groin in its supplied length. I also have a tendency to rash along my thigh, shortening also helps eliminate some of that.

I am with a new wound specialist..........one insisted on by my prosthesist. I cant see where this one is any different than the preceding one, his treatment routine is almost the exact same as the preceding one. Unfortunately the results are the same........I still have the lesion after 2 months of following his suggested routine.

Refitted...... I get refitted every visit..........they have made 6 different sockets for me including 2 I simply couldnt wear at all. Seems like I need to put this thing on & just power my way through the discomfort..........my husband says that is a foolish outlook but I cant understand how I am to get used to any one of these if they keep changing it every visit..... They claim that if the socket is fitted correctly, I should be able to get up & go without any discomfort. My current socket has a 'bulged' place over the lesion area to remove some of the contact pressure.

Liners....... I am using nothing but the Alpha liner. I have experimented with cloth 'socks' under it & they tend to allow the socket to turn my foot off to odd angles. Getting on & off tractors & the mowers & tiller is difficult enough without my socket turning when I hook it on some metal appendage associated with this equipment. Difficult to operate a tractor clutch pedal with one foot turned in at a 45degree angle!!!! If this is std proceedure, seems a bit foolish to me that they wouldnt simply eliminate some vertical segments of the cloth layer on the outside of the inner Alpha liner so the socket would 'stick' to it.........?

While I might have missed it mentioned in the above comments, I have a sticky inside, thin 'liner' that rolls up on the outside from the very bottom of the socket to well above my knee. I dont see how the socket/foot would stay attached without this part. Unfortunately, this adds to the already uncomfortable thickness in the back of my knee, further restricting my movements. I have shortened it to conform to my shortened inner liner.

If this is std proceedure, seems a bit foolish to me that they wouldnt simply remove some 1" wide 4" long vertical segments of the cloth layer on the outside of the inner Alpha liner so the socket would 'stick' to it.........?

We gardened & went fishing over the weekend, the irregular terrains associated with tilled soft garden soil & creek banks was very difficult. Several places at the creek, I had to sit & slide. He had to cut poison ivy, small trees & vines to make me a different path back to the truck when we left as I couldnt go back the way I came in due to the steep part. I went deer hunting last fall without my prosthesis........He helped me slide down a steep hill to a platform he had built into the side of a tree where I could rest my foot on its roots. Since I coudnt go back up that slope, he had to cut trees & move some rocks & it was still a complex undertaking for me to get back into the truck below my platform to leave.

Leg consultant......not exactly sure who this might be. I am not sure I have a leg consultant unless you mean the prosthesist..... the wound doctor...? the amputating surgeon... During my last visit, last week, the wound dr mentioned 're-amputation'.......not a phrase I wanted to hear.

Donna Heck

[ann-]

Hi Donna, think I posted to you before, as also have skin grafting and also currently using an alpha liner.
I didn't understand your sticky inside thin liner, is that what over here we call a sleeve that comes up the outside and sticks to your skin at the top of your leg.
I usually trim down my Alpha Liner a bit too, I think you have to have it at least 8cm or so above your knee, but I usually go a bit higher as after a while I get a roll on the top of it, so usually end up trimming down again a bit later. For me this liner has been a bit of a life saver, I don't usually get any problem with the skin, though know its a bit restrictive behind the knee.
What kind of socket do you have? I have an ordinary 'cup'/socket but inside I have a foamy pink material which over here they call a peelite inner liner, gives me a bit more protection, and then the leg with alpha liner and sock or two goes in that.

I too had a revision amputation about four years ago, this was mainly because I had my legs amp'd when young and the bones had grown, plus had no muscle at the back of stump, front of stump grafted so they reconstructed taking a bit off and I think using tissue from the inside, this worked well for me, but I still have the graft on the front. Had this done by a plastic surgeon. I was off the legs for about three months, but it wasn't as bad as I had anticipated.

[heckinohio]

Thanks for your comment....... I went to my wound specialist yesterday, he has determined that if my lesion doesnt close on its own in 3 weeks, he is going to try some artificial skin. I have mentioned plastic surgery to several drs. but have drawn a blank.

I really need to eliminate the terribly sensitivity of the end of my limb. I cant even touch it without super uncomfortable shooting sensations. Much like rubbing sand into a burn.

I have had little luck with the cotton sleeves, always seem to allow the foot to twist away from straight. I am now struggling with the soft dirt in the garden.....back to that this afternoon.

UH-Oh, clock just struck noon, have to close now......

Donna.

[ann-]

Hi Donna,I think probably things are done differently in different parts of the world. Over here in the UK I have never been referred to a wound specialist, but we do get referred to plastics quite often, maybe they are much the same, just go by a different name, whatever though hope that they get it sorted for you quickly.

The sensitivity you mention might go together with the lesion, I find any kind of wound or rub on my stumps gives enormous sensitivity, sometimes even thinking about it, usually when things are healed and I am not worrying about it, I find that sensitivity can disappear, although sometimes you have to work on your head a bit and tell yourself its ok.
Hopefully when it is all healed and sorted the sensitivity will disappear.

[heckinohio]

I am still struggling with the soft soil in my gardens. In fact, everything is a painful struggle. I have taken to using my cane.

I went to a shooting event where I sit on an ammunition can to operate the gun(s)..... I couldnt even sit on the 8" tall can without losing my balance & falling off backward. Only alternative is to kneel & I simply can no longer do that.

We have been rebuilding a 4 strand barbed wire fence along the highway in front of our farm. Everything is rather steeply up-grade & pocked with cow hoof prints. I have to slide or crawl in the dirt, often turning my foot. I cant get up until he comes to get me.........Then I am so sensitive & unable to balance my self that I need help moving the 4-6ft to the truck door. This is much worse that the soft but reasonably level gardens. Many garden operations can be done from my tiller seat, that sure is handy!!!

My prosthesis engineer & a doctor are coming to shoot this weekend at our farm. While it is not on the agenda, I am sure he will ask some questions & I will be able to show him the terrain I have to deal with.

RE: plastic. I mentioned that I had asked about that on prior occasion & drawn a blank look. Just how durable is plastic that is over or in grafted skin???

Donna

[ann58]

Jun 13, 2013 12:46:00 GMT -7 heckinohio said:

I am still struggling with the soft soil in my gardens. In fact, everything is a painful struggle. I have taken to using my cane.

I went to a shooting event where I sit on an ammunition can to operate the gun(s)..... I couldnt even sit on the 8" tall can without losing my balance & falling off backward. Only alternative is to kneel & I simply can no longer do that.

We have been rebuilding a 4 strand barbed wire fence along the highway in front of our farm. Everything is rather steeply up-grade & pocked with cow hoof prints. I have to slide or crawl in the dirt, often turning my foot. I cant get up until he comes to get me.........Then I am so sensitive & unable to balance my self that I need help moving the 4-6ft to the truck door. This is much worse that the soft but reasonably level gardens. Many garden operations can be done from my tiller seat, that sure is handy!!!

My prosthesis engineer & a doctor are coming to shoot this weekend at our farm. While it is not on the agenda, I am sure he will ask some questions & I will be able to show him the terrain I have to deal with.

RE: plastic. I mentioned that I had asked about that on prior occasion & drawn a blank look. Just how durable is plastic that is over or in grafted skin???

Donna

Donna, if your foot is turning it sounds as if your socket is too large....are you in a vacuum socket or pin type. You are using an alpha liner, then socks over that and then your socket., then you should have a sleeve that is over your socket about half way and covers any type of liner or sock you are wearing & touching your bare leg thigh OR when you have a pin-type it is basically the same but without the over the hard socket sleeve. Another thing sometimes helps is to rub your your amputated leg {sometimes tapping it} to desensitize. Maybe you can understand what I am trying to say. Good luck, nothing worse than a darned leg that doesn't fit.

[heckinohio]

Shooting event didnt develope, one of those guys was in a car accident. I am to go back to the wound Dr. on Weds. I am sure the prosthetic folks will want to see me too. As far as I know they will want to graft some pig skin over my lesion, which has shrunk a bit on its own.

I kind of agree that the socket feels a bit big. I was wearing it with the inner liner not folded down at the top, less bulky behind the knee that way. They insisted I go back to turning the top of the inner liner down so that the sticky side is out & against the sticky inside of the outer sleeve. They tried a vaccuum but they felt it was detrimental to the open lesion. I have no pin.

Not sure what we will do tomorrow but suspect we will be back on fencing. We will try boating for the first time in 2 years this week.

Donna