Syme Prosthesis vs BKA Prosthesis?

[Unicorn]

I just had my foot amputated and I'm just now getting my prosthesis. I have a syme prosthesis and it looks very ugly so far.
I really really hate it and I feel that I cant wear skirts or dresses in this... Walking so far seems fine, however. 
Should I get another amputation a little farther up my leg so I can get a BKA prosthesis? If so, how will that effect my walking, moving, activities?
Which one would you recommend? Which is better?

[cherylm]

Hi, unicorn, and welcome! You're asking a pretty complicated question there! I'm a basic left BKA, so I'll tell you my opinion and hope that someone with a symes will chime in with their own point of view.

You have a big advantage with your symes: you can put weight on the end of your leg. You can stand and possibly even walk a bit without even donning a prosthesis at all. Your residual limb is very stable, with no "loose" bone ends to deal with. As a BKA, I have none of those things. My prosthesis generally fits well and I can walk well with it...but I have ongoing problems with soft tissue swelling and shrinking and needing ongoing adjustments to keep my prosthesis fitting well...and it took me several months, at first, to get used to walking in it. From a pure stability and performance standpoint, I'd be inclined to keep your symes, rather than cutting off more of your leg.

Now, you do have a point with the "appearance" issue...a symes can look more obviously "odd" than a BKA (if the BKA is performed well and your prosthesis fits well, that is). However, I can guarantee you that you are much more aware of how your leg and prosthesis look than anyone else is. Really. People just don't spend a lot of time looking at other people's ankle area. Before you consider taking off more of your leg purely for "looks," see if there are ways you can dress to provide a little camoflage for your leg. Boots, maybe, or tights or opaque stockings...keep the emphasis on your upper body, draw attention to your face, look folks in the eye, be active and involved, and let your personality show...ALL of that will be much more interesting to people than your ankle.

Give it all some time and thought, before you submit to surgery that you don't need...and don't be afraid to ask questions and look for suggestions!

[Unicorn]

No... I cant walk without my prosthesis at all. And with a symes, and I think with any kind of amputation, you also have to put up with shrinking and ongoing adjustments for your prosthesis. So, I dont think that will change. And I'm super young, still a teenager, and I've had to put up with problems like this since I was a child. So I'm pretty confident I can get used to walking in something different fairly quickly, with or without putting weight on the end of my leg.

I know I am more than just my appearance, but I also deal with a lot of insecurity and social anxiety, so my own appearance is something super important to me. And I dont want to camoflage my leg. I want to wear skirts, wear knee high and thigh high socks, etc. I cant fit those types of socks over my prosthesis, so far that I've tried. My prosthesis is just too bulky. I can't wear skinny jeans, or anything other than yoga pants and etc. Which just seems sloppy, I dont want to look like that for my job and work and such. I want to look nice and professional.

Symes are so bad looking. It makes me cringe. A BKA prosthesis looks so much better in my opinion, more cool looking and it seems like you can wear anything with it. If you can preform well in one, and walk well, and all that, then what's so bad, really? I've seen plenty partake in sports and other physically engaging activities. I know a lot of people wont care how I look, I understand that and that's fine, but my own appearance bugs myself. I want to be active and I want to be happy, do things, and look good doing them, and feel good.
That's really all I want.

[stonecutter]

Hi Unicorn.

Prosthetics do present the issues with clothes as you specify. I'm (obviously) a guy but there are certain pants that I just can't / won't wear. I haven't wore sweat pants since before my amputation (21 years now). All of my jeans are Relaxed fit because any narrower cut leg is tight around the knee and it ends up bunching up. For the first 2-3 years I didn't wear shorts. Once I started and realized that people don't make as big of a deal as I thought they would - I relaxed and wear them a lot in the summer now. Now that I have a young daughter and she decorates my prosthesis with unicorn and Dora stickers I wear it around like that too.

You will find that over time you will figure out what works for you to make you feel most comfortable. What I can tell you with certainty - is that while you are trying out different things in order to get there - it looks less horrible to others than you think, and it's less obvious to others than you think.

I am an above-the-knee guy. People are usually not aware that I have an issue unless a) I am having a bad fitting prosthesis issue (limp) b) I walk up or down stairs - usually they ask if I have a bad knee. c) I walk up or down inclines d) when I sit down and my foot sticks up rigidly in the air.... My point is - it will be less obvious to others than you perceive it to be.

With a symes, I suspect that even when you are wearing a skirt, most people may think that you are wearing a new fandangled orthotic of sorts... I could be totally out to lunch on that.

The first sentence of your last paragraph makes me smile a bit because I thought the same thing - except the exact opposite! Prior to my amputation they considered for a very short time doing a symes with me. I had a major infection with gangrene and they decided that doing that would be risky. So BK it was. I remember thinking if only ...

At any rate - the cut has been made and we have to deal the hand we are given. You can make the best of it - you just have to figure out what works for you. This is still very new for you and it won't feel like it does right now forever (both mentally and physically). You will soon become a pro at this.

I'm rambling now. I hope that's helped you a bit.

More questions? Fire away! We are here to help.

I hope you're having a great day.

[Ann]

Hi Unicorn, Sorry, like the others who have replied I am not a symes amputee either (bilateral b/k) but I too became an amputee when I was a teenager so can understand a bit where you are coming from regards clothes, appearance being happy and feeling good, because that all kind of goes together and I know its not easy when you are young and you want to look good and not be that different from everyone else whilst at the same time you are having to get to grips with using prosthetics and everything that goes with that.

When you are a new amputee, whatever amp level you might,  its not unusual for the new prosthesis to not only look a bit bulky but also feel bulky too, in my experience they don't always feel very comfortable and it can take some time for the prosthesis to feel like its working with you and becomes almost of part of you. Sometimes its usual also to be given a pretty basic set up, usually because you will have a lot of changes in the shape of your leg etc. and need socket changes etc. So what we are given to start with, isnt what we end up with some months on down the line and they usually get to look and feel better as time goes on and got to say that over the years of spending time in prosthetic fitting rooms I have met many new amputees, of all levels, who have felt much the same as you do with their first prosthesis. So I don't think the feelings you have about your new prosthesis are particularly unusual even with your concerns about symes compared with b/k amputation.  I would think, if as you say "walking seems fine", then that is a definite plus and sounds like you are doing pretty well with it, so thats really positive and something you can keep building on.

Over the years I have found that walking has taken priority over everything else .... I have had so many different prostheses over the years ... some have been more advantageous regards clothes, some not, clothes fashions change but so do prosthetics too, you really do learn to experiment, adapt, try out different things and work out what works for you. You will find many of us girls and the guys struggle a bit with clothes, especially in the early days,  even b/k amps with trousers particularly, shoes, boot etc., but I am sure as you begin to get more confident about your prosthesis and what you can achieve with it then this will probably feel like less of an issue.

Comparing a symes to a b/k, I couldn't really say, though from my own experiences as a b/k imagine that walking wise as a symes you are going to have more leverage, perhaps long term able to partial weight bear, which would I imagine give more advantages, which might in the long term be a trade off for you, regards what components/cosmesis for that type of prosthesis are available.

Bear in mind that you are young and have loads of years ahead of you, residual limbs do shrink down and change over the years, you can always go shorter but not usually longer. In recent years, as a b/k amp I have to have revision surgery, partly because I was so young, and have had to go shorter to get a better shape, so although this was only inches, the length I had to start with has been useful as they were able to use what I already had to reconstruct.  I would never have envisaged or even know if this sort of surgery could have been done all those years ago. To be honest this hasn't affected my walking, or activities to much extent, although I am older and have probably slowed somewhat, it has though made some differences to the prosthetics and this latest revision has taken me probably the best part of nearly a year to get my prosthetics sorted out and I am still not properly there yet, so again bear in mind the length of time it can take to get properly walking etc. again.

Never say never about anything to do with prosthetics and about what you can achieve with them .... you can achieve whatever you want, things will get easier.  There have been so many innovations in my life-time and I guess there will be in yours too .... keep talking to people though, ask questions, especially to your prosthetic people, tell them your concerns, ask what options you have, let them know what you want, sometimes they don't realize the little things that are important to us.  


  

[Unicorn]

I see.

Well, I've had to deal with things regarding walking and physical activity my entire life. So, things like this aren't particularly new...

I was a bit emotional before, but now that I've had time to cool down and look at my surroundings, it isn't as bad as I had originally made it out to be... ^^; Heh...

I still think this thing looks bad. I mean, I don't look like a cool cyborg at all. I don't look fashionable or anything. Nothing is sleek, it's still pretty bulky looking. But when I'm around the right people, I don't care about my looks at all really. So I guess it comes down to the types of people I need to be surrounded by.

As for feeling like it's working for me/feeling like it's part of me, well that isn't an issue. I'm quite comfortable in it. I feel as though it is part of me, and that I can use it as part of me. I'm pretty good at adapting. I think problems like that all come down to how much you focus on it. If you tend to have a habit of repeatedly thinking about how you don't have a normal limb, or that you are using something that helps you carry on in every day situations, well, isn't that kind of isolating it?

I don't think that's good. I don't focus on things like that. I focus on what I want to do. Just think of your body as a whole, rather than focusing on certain parts.

I guess I'm no good at explaining things, but, things feel natural to me. Way more natural then back when I actually had a foot. But then again, that foot was dead anyways. It was useless, so the only option was to get rid of it, otherwise I wouldn't be able to advance.

So where things are at currently, I am able to advance. Even though it isn't exactly how I had imagined, looks-wise, I can walk just fine. I have yet to discover what my full abilities are, however. Running, jumping, how fast I can walk, riding a bike, skateboarding, swimming, rock climbing, hiking, my endurance, etc.

For now I will see how much I can do, instead of worrying about how it looks. I understand that I wont be able to do everything. And that some things I will need to sacrifice, but if there is something I really want, I'll probably move towards it regardless. That's just how I am.

And it seems that not many amputees are symes...? I haven't met anyone who has a symes yet. Really, it's kind of sad. I feel lonely. I want to meet someone who's in the same boat, or has the same/very similar experiences.

Come out and show yourselves so we can talk!

[Deleted]

I keep seeing your message thread, so I finally have been moved to comment.

I had a traumatic amputation of my arm that resulted in so much constant pain that I eventually had to have the entire arm and shoulder removed just so I could continue my life. The pain from some amputations is unbearable, like constant 24 hour a day dental drilling without novocaine.

I tell you this because if you now have a pain free amputation, you need to count yourself lucky and not try to change it.

Even with planned amputations, there is a risk of life long pain, phantom sensations, and such.

You risk pain that cannot be cured and will never go away,

Asking a surgeon for advice in this is like asking a waitress in a restaurant if the food there is good. You'll always get a yes.

Even if there is just a one in a thousand risk of life long intractable pain, you should not do this for aesthetic reasons. Would you fly in a plane that had a 1:1000 chance of crashing?

I feel strongly that this surgery, for aesthetic reasons alone, is a foolish idea.

Listen to the other sage advice you have gotten already. No one cares or notices but you.

I am not much for public discussions, but if you want to write privately with someone your age, feel free.

[cherylm]

Hi, Unicorn...I honestly think you're on the right track now. If you have a choice between functionality and appearance, always err on the side of functionality!

I can kind of identify with the "appearance" side...I was still working in a very conservative office at the time of my amp, and my leg guys basically just "told" me that I should have a cosmetic cover on my prosthesis, that it would look "just like a normal leg." So I spent my first few years in a prosthesis covered with styrofoam and a nylon stocking. Yeah, it looked more-or-less "real," but it bothered me. So once I retired, I also retired my cosmetic covering. I like my prosthesis much better now...but I would never have done anything to it that might have made it less functional than it was. I also know of amputees who love their cosmetic covers and would never want to b seen without one...but again, they want the best functionality available to them.

Actually, I think you're likely to be really pleased with all you'll be able to do with your symes. It's true that there aren't as many of them around as there are BKAs, but all the activities you mention should be easier to do with your symes than with the weight of a BK prosthesis. I know of a symes who was the pitcher on her high school varsity softball team, and I once saw a video of a symes friend hopping an obstacle course on his prosthesis. If you're really determined to work at it, ther will be very few things you won't be able to do. And who knows...with all the various advancements we've had in prosthetics in the past few years, they may even come up with a symes prosthesis that looks "cool" to you.

You never can tell.......

[gerberadaisy]

Hey there kiddo,
Haven't been on this site in a while. I am a Symes since Oct 2012. I hear you...and I know what you are talking about. On the run at the moment, can't write long stories, but I promise to check back in with you in a while... Don't do anything drastic just yet... Feel free to message me if you like.

[gerberadaisy]

I came back to chat with you as promised... After having a read of your thread, I am getting a fair sense of maturity settling in with you. Let me start off by telling you a little about me. My foot loss was a vehicle accident back in 2009. It didn't happen immediately, but after 3 years of struggling I opted for a Symes. I am an operating room nurse myself, and couldn't hack a desk job!! Was doing my head in. I also have 2 active dogs I love to walk with... Can do all that now, and then some!!

I see a lot of things that are pretty neat about the Symes, have already been mentioned. The benefits of mobilizing your prosthetic with more residual limb length, ability to weight bear without a prosthetic/crutches. (This I could only start doing after 6 months, my prosthetist is a Symes too, and he said he couldn't walk on his stump for at least a year.) The other big deal with the Symes is the fact that your stump is your heel pad. This is a part of your body accustomed to weight bearing. The BK stump must adapt to becoming a weight bearing pad. And, very importantly, I see it has been mentioned tho, is that if at some stage in your life you need a stump revision... and it does happen sometimes... then you may have to go BK. If you go BK now, you lose that option.

I know that is not all you really wanted to hear tho. You have probably heard that all before in some way, shape or form. The Symes prosthetic is not the prettiest. Granted. I wasn't impressed with how my first one looked either. With time, they do become narrower as we lose that swelling, there is also muscle wastage etc. But the turnaround for me I think was when my prosthetist showed me what he'd done with his. He told me that with all the advantages mentioned above, just change the way you look at the device and your attitude about it will change. He's a Harley fan and had bikes all over his prosthetic. Find something you love and get them to plaster it all over your prosthetic. Make it your own. Ever wanted tattoos? Flowers? Butterflies? It's a changeable form of body art we now have. I get to switch it out every couple of years. We may as well be proud of them...

How are you doing otherwise?

Take it easy, hope things are getting easier for you.
Penny.