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Heather Mills - Amputee Forum
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Shelby

Possible Revision Surgery

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Hi everyone! This topic could go in a few different places, so I just decided to post it here. As I mentioned in my intro post, I'm yet again thinking about having more of my leg amputated (I'm currently a symes). I've been thinking about this on and off since I was about 15 (I'm 20 now) when I got my first sore. I've since had quite a few sores and various prosthetic problems. Being a symes, the prosthetic options are pretty awful. I've also torn my meniscus in my knee and even though I had surgery about 4 years ago, it still hurts pretty often, and the heavy prosthetic and bad foot I'm stuck with can't help that.

I recently met with a new prosthetist who was a RBK. He told me about how he had an IPOP (immediate post op prosthetic) placed on after his amputation surgery. He said he was putting a little bit of weight on it the next day and walking within a month. He told me that since I was young and already an amputee I would likely have similar results. He said it's a shame that there is so much new technology out there that I can't use, and he's so right. The prosthetic feet they make for symes have very little spring in them, so my knee is responsible for most of my movement when walking, and running is hard because I have to lug a heavy leg with me. I'm very active, I go to the gym and exercise, I do yoga, but I would LOVE to run. I see people running around campus all the time and I always think how I want to do that. Don't get me wrong, I'm so grateful for even being able to walk without pain, but I want to be able to do everything. I'm going to school to be a vet (pre-vet now, but vet school in 2013 hopefully), so I'm going to have a very active career and want the best possible leg. Another, more superficial, disadvantage of being a symes is not being able to wear high heels. They don't make prosthetic feet that bend, so I can only pull off about a 2 inch heel, maybe 3 if it's a chunky heel/wedge and I don't have to walk a lot. Being in college, it's hard seeing all of your friends in adorable heels when you go out and being the only one in flats.

Like I said, I've been thinking about this on and off for about 5 years. Making a mental pro's and con's list, the only pro of staying a symes is being able to walk without the leg. That would be hard to get used to. But that's about it. And maybe the recovery time. I'll be a senior in college soon and will hopefully be going to vet school right after that, so I only have about a 2-3 month window where I could get this done and be back to normal. I found a doctor in Baltimore that's supposedly really great so I'm going to make an appointment just to talk to him this summer.

I'd love to talk to other symes amputees and get their input, and any other types of amputees to hear what they have to say about their prosthetics. Oh and anyone who has had an IPOP too! Any advice or comments would be great. Sorry for the super long post. I guess I tend to rant...

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I'll leave the "technical" discussion here to the symes folks...but I will point out that, unless you've got the means to have an entire separate leg made for wearing ultra-high heels (and there are folks who do just that), a standard "adjustable" foot on a prosthetic leg tends to limit you to around a 2" heel. So just keep that in mind as you look into your options!

Okay, symes folks...have at it! :biggrin:

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For me, as a physical therapist, the question would always be; which would be more functional for you. The advantage to a Symes is being able to walk without a prosthesis and having more distal feeling in your leg which gives greater stability in walking. The advantage to a BKA, as you have mentioned, is the more advanced technology allowing energy storing feet and, possibly, a nicer looking prosthesis. My amputation is the result of trauma and I am glad I didn't have to make the decision to amputate or have a revision (not yet anyway). I think it is maybe a mistake to think that being a BKA would be better. Right now you are pain free and able to live your life well. There is a possiblity that a revision would result in more pain and other undesirable outcomes.

I totally get what you are saying about wearing heels. Are you sure they can't make a fixed high heeled foot for you on your current type of prosthesis. I have a separate foot for high heels as the adjustable feet don't really bend in the middle and I like the look of the fixed foot better.

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Cheryl- I had no idea they only adjusted about 2 inches. I can pull that off myself!

Right now you are pain free and able to live your life well. There is a possiblity that a revision would result in more pain and other undesirable outcomes.

That is my number one concern. The problems I have now are minor, so is the risk worth it to try to improve what I have? I honestly have no idea what I'll do. And I don't have to make the decision now anyway. This type of thing requires years of thought.

I was told that they don't make feet at a fixed heel hight for symes. Maybe there isn't a demand for it? I'd really be interested in finding a way to get someone to invent one. If I didn't want to be a vet I'd go to school to be a prosthetist and do it myself!

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Hi Shelby, sorry don't know too much about symes, am bilateral b/k ..... personally, if I was pain free, able to walk without the prosthesis, and doing ok in my day to day life there's no way I'd be opting for revision .... I think your two to three month window you are giving yourself to be back to normal might be pushing it a bit, least it would be this side of the pond .... I've chatted to a few people who've had elected B/K surgery and it doesn't always turn out as expected ... there are risks, anaesthetics, infection, etc.etc. not to mention the pain and discomforts.

I am a lot older than you, so maybe my age informs my thinking, but wouldn't be risking all that you have for higher heels or perhaps even the opportunity to run. Myself I had revision surgery as a b/k, to keep mobile and it was successful but it was quite a long haul and took about 3 months to get fitted with a prosthesis then months of physio etc. Your age is another factor, I've been using prosthetics since I was younger than you and know it takes its toll on you as you get older, the stump changes also, so if you had a b/k now it could be that by the time you get to my age you could be facing another revision, so going shorter again ... all do-able but I myself wouldn't 'choose' that route.

And yes there is great technology out there which seems to make all things possible, but not everyone is able to access that and we are always reliant on socket fit.

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There are certainly no guarantees you'll be able to run and be free of sores and prosthetic problems as a BK. And though wearing high heels might seem like an important part of your life right now, it's a relatively minor issue in the long run. The more of your leg you have removed the greater the burden on what's left and you could find yourself with much greater challenges some day than not being able to wear high heels.

If you can get up in the morning or the middle of the night or at the beach or at the pool without a prosthesis or crutches that's a big deal - something you might currently take for granted.

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Ann- You're absolutely right. The unknowns surrounding the surgery are very risky and scary.

Gibby- If I made it sound like being able to wear heels would make me get this surgery I certainly didn't mean it that way. The inability to wear heels isn't an important part of my life now. It's an inconvenience, but in no way does it alter my quality of life. I wouldn't be able to wear them most of the time anyway- heels wouldn't make working with farm animals and herding sheep any easier :) It's just an added bonus of not being a symes. And you're right about facing much greater challenges than not being able to wear heels. In the past 5 years, I already have. I've been on crutches for a total of 6 months because of sores, dealt with chronic knee pain due to a torn meniscus and heavy prosthesis, and cellulitis that I had to be hospitalized for. I just need to find out what type of amputation will give me the most out of my life.

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Hi Shelby,

I can relate to you because I was a symes for 20 years. Being a symes I had always lived a normal life. Five years ago I started having pain. My prosthetist made different prosthesis, and I did an MRI, and cat scan. I had surgery thinking it was a nerve causing the pain. I did treatments. Nothing was working. I was told very early on that amputating higher was what I needed to do. I kept on trying things...till I finally realized that nothing was working and my quality of life was very poor. I was in and out of depression, had

lots of anxiety and one day I was online and I found this Forum and started talking to people, and I read about the Ertl procedure, I became very interested. I did lots of research about it. After 4 years of trying this and that and finding the Ertl procedure...I had a bk amputation. I traveled to the US to see Dr Ertl. I will be 1 year out at the end of June. I can tell you that I am very happy to have gone through with it.

Having a bk amp is better then a symes. For 20 years I had the same type of prosthetic. I was so limited. Now I have choices. I know I am happy making the choice I did!

I wish you all the best on your decision!

Mary

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Shelby, if you will pm me, I have a friend who was a symes bilaterally and now she is a bk bilateral. She would love to talk to you, and she is in New Jersey........ I know you would enjoy talking with her, as she's been in the same position that you are. She has "walked the walk" so to speak.

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