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ebtalley

Prosthetic pain

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I finally received my first prosthetic about 2 weeks ago. I have to admit I did let myself dream a little bit in preparation of getting the new leg. I dreamed of standing up and determinedly taking my first steps without the support of the parrallel bars, or anything else. Not suprisingly reality was quite different, I started out with a 3mm silicone liner from Alps and I was in excrutitiating pain on the distal end of the stump as well as around the knee. A new 6mm liner has since helped me stand more comfortably but I still cant bear my full weight on my left side, meaning walking without a walker is impossible at this point. Is that pain something that will get better with time or should I be after my prosthetist to make some revisions? The fact that I cant straighten or bend my knee on the right side does add a bit to the problem but I can seem to weight bear on it comfortably so thats a plus.

Cheers

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Hi

The excrutiating pain??? Been there, done that and it's bloody awful! I can really empathise with you. I wondered how the hell I was going to make any progress at all. All I can say is that hopefully things WILL get better. It's about building up strength in your stump and residual limb, getting confidence in what you're doing and getting your pegleg comfotable. That usually means your body adapting itself a bit. None of this is easy, none of this is quick (at least it wasn't for me). You're younger, fitter and much more handsome than me.

Nobody said this amputee lark was easy, but it can be very rewarding. There's one thing that I've found though in my thirteen months of 5 toed-ness. The amputee community is on the whole, one of the finest bunch of human beings I've encountered either actually or virtually.

If this sounds pompous and pontificating, I apologise; I'm capable of being both! I really hope things improve for you, and one of the great things about this board is that the ONLY people who will understand what you're going through are amputees. You can use this board to pour your heart out and no-one will think any the less of you.

Keep going, keep improving!

My very best wishes

Roger

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Hi there

Getting a first leg is always wildly exciting, and the reality when wearing it, disappointing to many. This happens to the majority of amps. How can it be different when we really don't know what to expect?

Having said that, however, "excrutiating pain" is something that you will NEVER get used to. It is very hard to try and define the difference between pain and discomfort. Discomfort is normal, and this can get better. Pain is a no-no. No socket should cause you pain. New sockets may cause you discomfort, like a new pair of shoes perhaps.

Good luck with the socket. It sometimes takes a while to tweak them and break them in, but if you persevere (and you MUST), you will be blessed with a good-fitting socket.

Remember always.....YOU are the paying customer. You employ the CP to make your leg. If you are not satisfied, you have every right to say so.

All the best

Ally

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BULLETIN. One thing to remember - THE LEG WAS NOT DESIGNED TO BE A FOOT.

Now with that said - it has to LEARN a whole new set of rules, and get used to them. If someone would strap a device around your good leg, and you put your full weight on it, it would hurt like the dickens also.

In time, it will become accustomed to it, and accept it, like a horse does to a saddle.

My first steps were out to my garage, (about 6 feet). It hurt so bad that I didn't think that I was going to make it back into the house. Within a week, I was freely walking in and out. Not without some discomfort, but tolerable. You'll be just fine. Today, I'm climbing ladders, and walking around on the roofs, and I'm 70 years old. By your picture, I'd say that you are a lot younger. :lol: If I can do it, you sure can.

Hang in there.

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Guest bearlover
BULLETIN. One thing to remember - THE LEG WAS NOT DESIGNED TO BE A FOOT.

Now with that said - it has to LEARN a whole new set of rules, and get used to them. If someone would strap a device around your good leg, and you put your full weight on it, it would hurt like the dickens also.

In time, it will become accustomed to it, and accept it, like a horse does to a saddle.

My first steps were out to my garage, (about 6 feet). It hurt so bad that I didn't think that I was going to make it back into the house. Within a week, I was freely walking in and out. Not without some discomfort, but tolerable. You'll be just fine. Today, I'm climbing ladders, and walking around on the roofs, and I'm 70 years old. By your picture, I'd say that you are a lot younger. :lol: If I can do it, you sure can.

Hang in there.

Your absoultely right Jim..The part of our remaing leg we have was not meant to be walked on!

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I agree that you should NOT be in excruciating pain. Have it checked out.

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I have to give a hearty second to everything Ally said.

It's a difficult situation because you don't know what to expect.

I spent 10 months in a lot of pain (and thinking the whole time that this must be normal) before I decided to switch to a proshetist who would actually listen when I told him I was in constant pain. He fixed it virtually overnight. If it's excruciating, there is something wrong. Good luck.

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Eric,

Having come back from a very bad accident with multiple injuries myself, I can tell you that it will take a little while to get used to your new prosthesis, and Ally is right, there is a difference between pain and discomfort... However, one more thing I want to cover is the "multiple injuries". For one thing, with your other leg being injured you will realize that you are trying to compensate.. It's sometimes hard to find that 'balance' that we are looking for. For me, between my prosthetist and I we decided that we needed to "step outside the rules" a bit for me to wear my prosthesis without causing other parts of my body pain. I didn't quite heal correctly from all my sacral/illiac and pelvic fractures.. So, my prosthetic side must be just a hair higher to compensate for the incorrect healing.Not quite right, but it works for me.

The first week or so with a prosthesis is the hardest. The one thing that we all have to remember is not to over do it. That can actually set you back if you do. I set my pt back by weeks by inadvertently wearing my leg to long in the beginning and getting very sore.

Talk with your prosthetist. Ask his opinion, discuss what you are feeling painwise, it might only need tweaked. It's amazin what just a slight adjustment can do...

Good luck....

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Guest bearlover

There are also many different systems and different types of prosthetics we have chiloces. Many prosthetist fail to tell some peolpe that. If one dose not feel right ask for another type, they offer what "they" think is best for you..But you have a choice.

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Thanks for the info and support, I kind of had an idea from reading older posts that if there is pain you need to go back to the prosthetist and have him look at it again but its helpful to be reassured that each one of you had discomfort when you first tried the prosthetic. I have a hard time explaining it to my prosthetist but I find that the pain comes when I roll off the toe, it places a lot of pressure on back side of the end of the stump. The extra three inches of silicone did wonders for that pain but there still is a lot of discomfort in weight bearing, which sounds normal at this juncture. I had pretty big calves going into the accident from bicycling and he had said that it created casting problems because I need something that I can fit over the calve but is snug enough to support my weight. I think we probably have to look at this again, or things might get better as my leg shrinks.

Ill keep your suggestions in mind

Cheers

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Guest bearlover

I have just the opposite problem! A very weak under developed calf from being in a cast and wearing a brace all my life and many operations, the remaing leg is weak and it is a struggle to hold a prosthetic.. Best of luck I know how fustrating it can be...But hanh in there it dose get better with patience and time.. LBK for 4 years now..

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Eric, I'll second what everyone else has said... and I'll throw in a few words as someone who also had to "work through" having a large calf. It WILL improve when your calf shrinks, in MANY ways.... but going through that shrinking process will raise its own set of concerns, and you'll need to pay attention to them in order to get/keep a good fit on the prosthesis.

I've been at this for two and a half years now... and I'm still shrinking. The first year was the worst... I was shrinking so rapidly that it was hard for my CPO to keep up with it. I literally returned to them for my first major adjustment only three days after taking delivery on my leg, and I continued to see them every two to four weeks for the rest of the year. Each visit was a "shrinkage" issue... by the time I'd have the authorization and casting of a new socket, my current one would be a mass of leather pads and my stump would be encased in 10-11 ply of stump socks. It was an incredibly frustrating period!

Soooo... for you, this means committing to a long-term relationship with your prosthetist. Don't -- repeat, DO NOT -- try to make do with a socket that is loose in ANY way. A snug socket fit can be uncomfortable at first, but you adjust and you get solid support from it: a loose socket is flat-out painful and can be dangerous, as it makes controlling the position of your foot and maintaining your balance more difficult. Ultimately, you don't want to spend your time worrying much about either of those issues!

When you feel a pressure point, and lt lasts for more than a day or two (I follow a "three-day rule"), get yourself in and have it checked asap. You'll feel like you're living with your prosthetist for a while, but it will be worth it in the long run!

One other suggestion... a kind of old-fashioned one, but it's worked wonders for me: if your suspension system will accept it, try wearing a suspension sleeve in addition to whatever else you're using. In my case, I'm a LBK wearing a pin-lock suspension... and then I also wear a suspension sleeve over the entire system as well. It took my prosthetic tech literally months to talk me into even trying it (it's the system he wears himself), and now I kick myself for not doing so sooner! What it does for me is to provide a more "normal leg" feeling... a bit of silicone "muscle" and "skin" to tie my prosthesis more completely to my stump. The difference in stability is amazing, and the fact that it provides some additional support for the weight of the prosthesis means less pressure on the stump when I bend my knee.

Hope you can get it sorted out soon... once you have a proper fit, it's amazing how quickly you can start to put your life back together... but that fit is ESSENTIAL. Good luck!

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Eric,

I had very muscular calves from a lifetime of riding horses. I faced the same thing you do now. I want to sort of warn you... It took me 4 years to completely stop shrinking. Sometimes, I still have those days where you will go up or down a few ply.. This past week, I had an issue where my lock was clicking and not quite catching. I am in a pin lock system. It was very irritating and annoying.. You see, I was working as a pari-mutuel clerk at the horse races and my stump had swelled from the hours of standing on it.. My biggest concern, at the time, was that the lock in my socket was malfunctioning.. After putting on my leg that I wear around the farm and it doing the same thing, and talking with the prosthetist, we decided that swelling was the problem. The next day, every thing was back to normal after wearing my shrink sock again after doffing my leg the night before..

You will learn all of this, step by step. A lot of the time, it can be trial and error, but you will get there, I have no doubt..

Glad to hear the fit is better...

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Hi Eric

I am still fairly new to this been an amp for just over a year and its tough really tough the best piece of advice i got from my friends here with more experience is:

Take your time do not do too much

It takes a lot of time for swelling to go down my leg is still not completely back to normal

I am on my 3rd socket and nearly on my fourth so take your time or you will regret it, there is nothing more soul destroying than being on your back for days maybe weeks with you stump in blisters!

You are on a long road to recovery so take your time and good luck the guys and ladies here are some of the best advice givers on this subject because they live with it every day know the setbacks, know how hard it is, and how tough it can get and how good it will be in the end.

Do not suffer in silence always ask for help, support and advice and it will be given and finally...

put a shirt on there are ladies present and you giving me a complex!

take care matey

nelly :rolleyes:

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missed an r in your

Dunt yoo jost hote these peple thit ca't spoll

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Hi,

I am sorry you are going through so many problems, but I have learned the hard way the journey is full of ups and downs--especially when you get a new socket. With my first socket I had so much pain and I could rarely get it on the whole way--and I went away for Christmas four days after I got it. ;)

I am now on my fourth socket and I went through hell with it about two weeks ago. This forum really helped and I echo others pain is a no, no. I had been walking great on the second socket, in fact I did three weeks in Viet Nam (I lead tours each year) with absolutely no pain, so I was crushed with the pain. I am back to doing well again, just adjusting to the discomfort.

Know it will get better and you have a right for it to be better.

Peace, Beth Marie

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Guest bearlover

I also went throug many sockets and liners in the begining its not a easy thing to go through..If you don't like or feel comfortable with your current prosthetist you can always look for a new one. A prosthetic shoulkd be tight but painful..Dose the pain go away when you take your prosthetic off? if so you need a new one or a adjustment to get the kinks out..hang in there it dose ger better give it time. Things like this take time. It took be 4 years to shrink down to a stabel size..

LBK for 4 years.

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I have some happy news to report, I went to the proth yesterday and he padded the back of my prosthetic to compensate for the loss in size of the calf and that has seemed to take care of most of the jaw dropping pain associated with wearing this thing. Before it wasnt distributing the weight across the back of my leg, instead putting it all on the back of the end of the stump OUCH. Now its a matter of getting some crutches and getting used to load bearing :mellow: . Soon enough Ill be back hiking I think.

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Eric

When I first lost my leg, (right BKA), my doctor told me that it would be two years before I began to feel like my old self. Boy, he was just about right on the money.

As for the stump - it took me about 4 to 5 years before I quite having sores on my stump. I got so sick and tired of seeing blood on my sock everytime that I took my leg off. I would have to force my self to walk, until the pain became so numb that I could get from here to there. I even made 4 trips back and forth from

Missouri to California, loading trailers, and moving us out here like that. THAT WAS FUN.....NOT!!!

Anyway, I have always blamed my first prosthetist (An AKA), because, as soon as I got moved out here, and another prosthetist (not an amputee at all), and he made me a new leg, my sores went away, and I haven't had them since, (and that was 14 years ago).

The first few years I was changing the ply on my socks all of the time. Again, since changing prosthetists, and getting new legs, I have steadily been wearing a 5 ply wool sock. Nothing more. Today, I'm not quite as active, and have gone down to a 3 ply - pretty much all of the time. But this is by choice. It's easier sitting all day in front of a computer with less sock. That's all.

Was it changing the prosthetist - or time, that made the difference? My guess is that it was the change in prosthetists, but then......... Who knows? It eventually worked itself out, and today - to paraphrase 1BL recently.... It's like putting my shirt or pants on in the morning and taking them off at night. The leg is just no big deal. Yesterday, I was climbing around on our roof, checking it out before the winter, since we just had it re-roofed this spring. I really don't think much about it anymore, and go about my normal life......normal for today that is. My age (70) slows me down a heck of a lot more than my leg - that's for sure.........but I really don't even let that slow me down any more than I have to. :lol: :lol:

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Guest bearlover

I agree Jim With my first Prosthetist at Advanced Prosthetics, it was a real hell for the first year. He made me wear 32 ply socks. :blink: I switched after a year with that jerk. I went to Hanger and found a really awesome experience prosthetist who is the regional manager and dose a fantastic job. If he worked for the first place I would have had a better time if I had him. The first guy set me back by about a year thanks to all the socks he told me to wear. It slows down the process of shrinking I was told..I did know that at the time. My husband and I have learned a lot about amputastion since then and are still learning. I'm only a amputee for 4 years now. So I hope to get better and better at it! :)

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Guest bearlover
I have some happy news to report, I went to the proth yesterday and he padded the back of my prosthetic to compensate for the loss in size of the calf and that has seemed to take care of most of the jaw dropping pain associated with wearing this thing. Before it wasnt distributing the weight across the back of my leg, instead putting it all on the back of the end of the stump OUCH. Now its a matter of getting some crutches and getting used to load bearing :mellow: . Soon enough Ill be back hiking I think.

With your attidude you WILL be back hicking! Give it time you will be fine!. I can relate to how fustrating it is. I had many socketd padded, twiged, adjusted and fixed so many times. You will be fine. Just try to keep a positive attitude up. As hard as it is some days..Many people are much worse off..I know you may not wnat to hear that when you are going through a tuff time..But its so true..I for one am very happy I still have my knee. And have all the thoughts of sympthy for above knee amputations.. Ia, happy you have some relief! :)

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Gosh, things would spook me off if I had just come on to this site with all the talk of changing prosthetist. Especially being so new to being an amp..

Eric, mostly it takes time.. You are very fresh into all of this, and there is some shrinking that is going to have to happen... Just because a socket is made, and then you promptly shrink out of it, doesn't necessarily mean that the CP doesn't know what he is doing.. It's just natures way of healing.. I could be in a check/test socket for weeks, thinking that it was finally going to stay this way a while and I'll be darned if as soon as the final socket was made, within a week or two I would shrink again.. I think over the last 5 years, I have been in probably 15 or so test sockets. I finally quit counting. Then, last September, we finally decided that I had stopped shrinking more or less. I will always have some volumn changes over the course of the day. To the tune of at least 3 ply of sock. But, I can live with that. I know what to expect now, and it's all par for the course. Recently, in all the heat we are having, I swelled up again, a little. At first, I thought I had a lock that was starting to malfunction. But, it turned out, all of my legs (farm, riding, and office) were all doing the same thing.. Then, a couple of days later, it all left..

I'm sure that with some time, and caution, you will be back hiking sooner than you think...Just take it easy in the beginning.... step by step.......step at time......

Easier to say than do, I know....

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Gosh, things would spook me off if I had just come on to this site with all the talk of changing prosthetist. Especially being so new to being an amp..

I think that most of us can relate to changing - Resturants, mechanics, doctors, lawyers, car dealers, and on and on and on - even friends. If for whatever reason, we are not getting the service or respect/attention, that we feel we should, then maybe a change is in order. Prosthetists definitely are no different or immune.

I don't reccomend to anyone that they should change. In fact, I try not to give any advice. I see my - and others - function on this forum is to SHARE THEIR EXPERIENCE, STRENGTH, AND HOPE - but, that is just my opinion.

If the EXPERIENCES that I read invlove changing prosthetists, then I listen (read) intently and pay attention - THEN I make up my own mind.

Unless any of us are qualified Certified Prosthetists, then all I feel that we have to offer are our EXPERIENCES, and those are usually limited to our particular condition and situation.

Apparantly only the ones who have experiences with changing prosthetists are the ones doing most of the postings. It is good to hear another point of view when there are those.

Summer, Winter, Spring or Fall - up 20 pounds, or down 20 pounds, my stump always stays the same, and has since the first year or two of my surgery, (19 years ago). I have worn strictly a 5 ply 99.9 % of the time. The only change I make in the heat of the summer while working outdoors, climbing up and down all over buildings, is to go in and wash and powder my stump and put on a fresh sock in the middle of the day. I may do this once in a day - occasionaly (and then again, may not). That's all.

NOW, this is my experience - not everyone's. So again, all I can do is to relate that and not advise.

I see this forum as a smorgasborg of experiences to choose from. I'd like to hear more of a variety of them, but unfortunately, for all of it's members, only a regular comparitively few seem willing to post.

Sorry about the "rant". Not the best of days - but that's okay. Just one of my "experiences". :P :P

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