Jump to content
Heather Mills - Amputee Forum
Sign in to follow this  
Chrissy

Strange feelings about my leg

Recommended Posts

Im not sure what to make of how I am feeling right now.

As some of you may know, I have been a left Hip-Disartic amp for a year/9 months and have had a Helix Hip/C-leg prosthetic since last Dec. I have been without my prosthetic for the past three weeks. It is currently with Otto Bock having a new replacement socket put on as well as to fix problems that have arisen with the Helix Hip. So I am back to where I was for the 15 years prior to my amputation, which is walking full time on crutches, which I am very proficient at.

It was a very rough summer with my prosthetic. The extreme, record breakage hot weather that we had where I live made wearing my prosthetic very uncomfortable. In addition, because of weight loss and shrinkage in my stump, my socket had become increasingly too big for me, and the ill-fit was really affecting my control of the prosthetic and my gait. I was becoming very frustrated and discourage about my prosthetic and whether I wanted to continue using it. Instead of providing freedom, I was feeling like my leg was holding me down. I had so many hopes and dream for my new leg; to be able to walk without unaided, to have a more normal appearance than I did with my shriveled up, diseased leg. So far, none of those dreams had come true. My family and friends have always seen me as someone with so much strength and courage and they always believed that if anyone could make this prosthetic work and do great things with it, I could. I feel right now like I have let them down.

I was surprised to find when I gave my leg back to my prosthetist three weeks ago to send to Otto Bock, I felt relieved that it was gone. It was like a weight, literally and emotionally, off my back. I felt like myself again being back on crutches. Honestly, I am much more mobile, agile and quick on my crutches than I ever was with my leg. I dont miss it a bit, and I am not feeling any anxiousness or waiting with baited breath to have it back.

So now I am faced with some very uncertain feelings about my future with my prosthetic. I had waited so long after my amputation to be able to have it. I went through a long healing with my stump after a severe reaction to the Vicral sutures used in my surgery. It was a long fought battle with my insurance company to be able to acquire the new Helix Hip and I am very fortunate to be able to have this new technology. I am feeling very guilty that I feel so happy right now without it! Perhaps it is all my own fault that I had such high expectation for what could be with my new leg and I wasnt being realistic.

I am not sure where to go from here. Perhaps wearing a prosthetic is not the best thing for me and I would happier just being an amputee on crutches. Maybe I just need to give myself more patience and keep persevering with it after I get it back but I dont know if I have the determination to do that. I am very scared right now I just feel like giving up the leg all together.

-Chrissy

Share this post


Link to post
Share on other sites

Chrissy, I hope that we get another HD chiming in here to give you some idea on what is and is not "do-able" with your style of prosthesis. In the meantime, though, I can tell you that your feelings at this point are pretty much normal. The first year is particularly hard for any amputee, and an HD has a harder time of it prosthesis-wise...it's just a lot harder to fit you to begin with, and your body is going through a LOT of changes, which makes keeping that fit difficult.

Now I'm just a below-knee...but I went through my own rough time with fittings and learning how to use the prosthetic leg. My first prosthesis was sized to my stump at that time...which was HUGE from long-lasting postoperative swelling. I had to change the style of pants I wore, simply because the pant legs were so very, very tight over the prosthesis that I couldn't bend my leg. And then, once I'd revamped my wardrobe to fit the prosthesis, my stump started to shrink and I had to have a new socket made...after only two months...and then again after three months more...and then again in another three months...then after six more months...and each time I shrank to a smaller socket size, I had to deal with trying to make a huge socket work while they went about casting and fitting the new, smaller socket.

The first time it happened, I thought that I was somehow "failing" the prosthesis and my leg guys! They'd told me that I'd change size and shape, and that I'd have to have progressively smaller sockets made...but they never told me it could be every two or three MONTHS! (I'm not sure they fully expected that at first, either.) In my case, it was two years before I reached the point that I could wear the same socket for a full year. I've now been in the same socket for a little over a year, and it's still fitting well...I may have finally stopped shrinking! After only five years!

Now each of those progressively smaller sockets meant a slight change in fit and position, so I had to adjust the way I walked in it over and over again. And I'm "just" a BK...you have a bigger challenge, if only because you have more prosthesis to try and control. You've replaced your hip, knee, and ankle...each of those joints takes a lot of learning. And the fact that you're very, very good on crutches can be both a blessing and a curse...a blessing because you're still able to live a normal life, but a curse because you KNOW that you can get this-or-that task done better and more quickly on your crutches. If your goal is to adjust to your prosthesis, having such a familiar "fall-back" position works against you.

I do know some HDs who simply don't care for the inconvenience of a prosthesis. They use crutches or a wheelchair, and they're satisfied with that choice. That may turn out to be your ultimate choice, too...and if it is, more power to you! But I've heard of HDs who have your prosthetic set-up and are quite satisfied with how much they've been able to do with it.

I guess what I'm saying is that, at only about a year, you're still quite "new" to this, and your prosthesis is still going to be undergoing some changes as your body changes. If your strength and courage are what have gotten you this far, why not hang in there a little longer (hopefully not five years, like me!) and see what's possible as you and your prosthesis both change and get to know each other. If nothing else, if your ultimate decision is that a prosthesis is not for you and you'd rather continue with crutches, you'll know that you've given it a fair trial and made a decision based on a solid base of experience.

Good luck to you..... :smile:

Share this post


Link to post
Share on other sites

Hey Chrissy,

I am an AK so not the same as you but I have felt the similiar frustrations that you are having. My story starts out 7 years ago I was diagnosed with sarcoma..which at that point they did limb salvage surgery to "save" my leg..my leg was still there BUT it didn't work. My knee hurt constantly and every little toe wiggle sent horrible pain. I constantly lived in pain every single minute of every single day. I had MANY surgeries fixing various things with my knee and leg but it NEVER helped the pain....and because of all of that I could not bend my leg so I walked by swinging my hip out and leaving my knee straight. SO now a year ago the cancer came back and I had the above knee amputation which my docs actually said how much better off I would be without the trouble and pain of my "real leg". I knew it would be hard work--but I never imagined it would be like it is. Because I walked WRONG for so long I am having a HORRIBLE time trying to actually learn how to walk by bending my knee and not using my hip. of course as soon as I get tired which is pretty quickly I go back to swinging my hip..Anyway my point to this long story is I have had MANY moments when I prefer to be on my crutches because I am quicker and can just get things done...and not worry about where my leg is in relation to the rest of my body. I am so nervous when I walk using my leg and I concentrate on every littel movement which is overwhelming...I am told that I won't always do that and when I get more comfortable it will become more natural. I understand the feeling of having a socket the is sooo big that it just feels as though it is going to flop off and of course when I am at that stage I walk way worse than I normally do...BUT when I have a socket that fits VERY WELL I notice I tend to do better with it and I definately have more patience for it. You don't have to feel quilty about maybe not wanting to wear it when you get it back. You may decide it is worth another shot once it actually fits right .....you have to do what is best for you and lets you enjoy the life that you want to live...if that includes your prosthesis then great...if not then great! its all about what makes you feel good!

Sorry for rambeling :)

Share this post


Link to post
Share on other sites

I’m not sure what to make of how I am feeling right now.

As some of you may know, I have been a left Hip-Disartic amp for a year/9 months and have had a Helix Hip/C-leg prosthetic since last Dec. I have been without my prosthetic for the past three weeks. It is currently with Otto Bock having a new replacement socket put on as well as to fix problems that have arisen with the Helix Hip. So I am back to where I was for the 15 years prior to my amputation, which is walking full time on crutches, which I am very proficient at.

It was a very rough summer with my prosthetic. The extreme, record breakage hot weather that we had where I live made wearing my prosthetic very uncomfortable. In addition, because of weight loss and shrinkage in my stump, my socket had become increasingly too big for me, and the ill-fit was really affecting my control of the prosthetic and my gait. I was becoming very frustrated and discourage about my prosthetic and whether I wanted to continue using it. Instead of providing freedom, I was feeling like my leg was holding me down. I had so many hopes and dream for my new leg; to be able to walk without unaided, to have a more normal appearance than I did with my shriveled up, diseased leg. So far, none of those dreams had come true. My family and friends have always seen me as someone with so much strength and courage and they always believed that if anyone could make this prosthetic work and do great things with it, I could. I feel right now like I have let them down.

I was surprised to find when I gave my leg back to my prosthetist three weeks ago to send to Otto Bock, I felt relieved that it was gone. It was like a weight, literally and emotionally, off my back. I felt like myself again being back on crutches. Honestly, I am much more mobile, agile and quick on my crutches than I ever was with my leg. I don’t miss it a bit, and I am not feeling any anxiousness or waiting with baited breath to have it back.

So now I am faced with some very uncertain feelings about my future with my prosthetic. I had waited so long after my amputation to be able to have it. I went through a long healing with my stump after a severe reaction to the Vicral sutures used in my surgery. It was a long fought battle with my insurance company to be able to acquire the new Helix Hip and I am very fortunate to be able to have this new technology. I am feeling very guilty that I feel so happy right now without it! Perhaps it is all my own fault that I had such high expectation for what could be with my new leg and I wasn’t being realistic.

I am not sure where to go from here. Perhaps wearing a prosthetic is not the best thing for me and I would happier just being an amputee on crutches. Maybe I just need to give myself more patience and keep persevering with it after I get it back but I don’t know if I have the determination to do that. I am very scared right now I just feel like giving up the leg all together.

-Chrissy

Hi Chrissy,

I am an AKA, for 9 months now (that way we are the same :)) and I have gone through lows too. My stump has a lot of grafted skin, so I can't use some prosthetics that people with good healthy stumps can. My good right leg, is also covered in scars from extensive grafting that had to be done in order to save the stump, being a girl I feel bad looking like this, and I'm on;y 25 and going to get married, so lots of my dreams of living life a certain way and looking a certain way might not be met..But then I think that as long as I'm alive all those things really don't matter.. I try to be a happy as possible.. there are times when I think that it would have been so much better if I at least had my knee. I think it's only human to think like that. I do talk to my fiance or my mom when I feel like this, so they understand what I go through, I think talking about what you are feeling to your loved ones really helps, and makes you feel that you are not in it alone.

I try to do my best, but sometimes I am unhappy with my leg too.. like I am learning (I am only 2 months into using the leg) the first year or may be longer is going to be difficult. It does take a lot of patience to let your body adjust to the new you and the prosthesis. I am sure that in your case your body would need to adjust a lot more.

I live with my fiancé, he sometimes tells me that he expected more from the leg. I understand why he thinks that way, since it's a completely unfamiliar situation that we are faced with, we may have expectations that might not be realistic.

These days I try to do things that I love doing like Paint, or cook that don't necessarily need a lot of walking around, basically trying to keep myself active and happy in ways I can. I'm sure there are things that you can still do, may be not like before. But try to make yourself happy, in new ways I'm sure your friends and family would love to see that the most.

I hope this helped :)

Take care..

Hema

Share this post


Link to post
Share on other sites

Hi Chrissy.........

I'm a left bk so would have no idea about being a hip disartic but I did have a friend that was. As other's have said, it is early on yet for being an amputee.... I think it takes a good two years for anyone to really "settle in" as they say.. That time is really just constant change and learning..

My friend, wore his leg, and he didn't. At times it would bother him so bad, that he just opted to take it off.. He was a businessman, a pilot, a vintage car lover,a mentor for many other hip disartic's, and many other things. He never let his amputation slow down his love of life..

What you choose, is up to you.. The fact that you are questioning your thoughts, may be that you just aren't sure yet.. Give yourself some time. Realize that the first couple of years are full of frustration, and change.. Your body changes, the way that you think and do things changes.. and it seems like every thing is so foreign to you.. I can understand why you would opt to go back to was so familiar and think about staying that way.. Maybe, right now, you can just give yourself some time. Enjoy your time,each day, no matter if you had a leg on or not. Once you get the leg back, try it.. see how things go.. and then, once you have made an honest effort, giving it your best, if you still aren't comfortable with wearing a prosthesis, and choose not to wear one, then you will know that you have given it your best and that is what your decision is based on. You don't have to feel guilty about the leg if you decide it doesn't work for you.. and just a bit of information here that might make your thinking about giving the leg a try again a little easier...if you later decide that you would rather not wear a leg, there are organizations that your leg can be donated to. They see that those who can use one, and have no means, can get one. Maybe, that thought, can put your mind at ease a bit and help you not feel so stressed about making a decision either way.

Good luck with things, and just remember, we're here for you if you need us....

Share this post


Link to post
Share on other sites

Hi Chrissy,

Once again I am at a total loss on what to say , and I havent really got a clue what it is like trying to walk as an hip dislartic , I do know what it is like as an aka but cant even imaging how much more difficult it is for you . So I wont even try.

What I would like to do is share one of my experiences with you, which might help in some small way.

When I got my arty limb , I really started pushing my limits ,knowing that a few months down the line I would get a better one then when I got a better limb I pushed them some more , then one day it hit me …………………………..

It didnt matter how hard I tried I would never be as good as I was with two normal legs, it takes an awful lot of hard work and effort just to do the normal day to day stuff, when this finally hit me and sunk in I got very depressed about the hole situation why bother, I mean I was killing myself trying to get back to normal, and when I finally realized that was NEVER going to happen, it was like I had hit a brick wall.

It took a lot of soul searching for me to

A) Accept that fact

B) Ask myself what I want…….. and where do I go from this point in my life.

I guess it finally dawned on me life was going to be different from this point onwards no matter how much I didnt want it to be.

There was times when I really wanted to throw the limb out of the window and it felt good to move around on crutches for the odd day , but for me (and I guess that I am lucky ) I always returned to the arty limb.

I guess what I am trying say and very badly is …………..do what is right for you or at least have a good long hard think about what you want to do , and if it means crutches so be it , we are all different sorry I dont have anything better .

Take care ………………Mick

-

Share this post


Link to post
Share on other sites

Hi Chrissy,

My cousin's husband is a hip-disarticulation amputee who recently received the Otto Bock Helix/C-leg prosthesis. It is in his closet. He had trouble with it from the start. Today he uses his wheelchair. Being an AKA myself I tried to encourage him to keep trying his leg. That is what I will say to you. When it comes back give it a try. Then you can honestly say that you tried to make it work. If it works then great! If not, you gave it your best shot. That is all anyone can ask of you.

Best wishes with your recovery!

Freddy

Share this post


Link to post
Share on other sites

Thanks everyone who posted and sent private messages, it really meant a lot!! There is such amazing support on this board!

I am definitely going to go back to my prosthetic when it comes back. I know I have to give it a better chance. I have no idea what will happen from there, or how I will feel. All I can do is follow my heart and just go with what feels right for me in the end.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×