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BaghdadBean

Hello! Possible RBK or RAK here, and have some questions (go figur

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Hello, I'm Bean, a soldier-mechanic-gunner turned sheep rancher in Oregon, U.S. of A. Long story short, I had a compound fracture of right tib & fib and a few other fractures during an incident in Iraq. I don't really like to talk about it, and I'm dreadfully self conscious of all the scarring on my body, so I had most of it tattooed over, and have experimented with various types of scar removal stuff with limited success. It turned out when I got medevaced that they couldn't do surgery right away, and they thought that some hardware from a previous fracture would hold the new one stable. Bad thing was, my surgery date kept getting put off until the leg had healed at a 7 degree angle, and then they diagnosed me with a really weird bone marrow problem. Basically, all the marrow in the tib and fib, and in the other areas that had fractured, had died and was eaten away into little weird hollow spots. Over the years, these hollow spots have grown, and I now am missing most of the marrow in my right lower leg (and a good number of ribs, part of my pelvis, and part of my shoulder). Obviously, this has been pretty sucky, and to compound the damage, I've had a couple of failed ligament and tendon transfers, numerous surgeries, and now have severe post traumatic arthritis and major nerve damage that is partially from the injury and partially from the multiple surgeries. My right knee was injured as well, but not badly, until one day when my leg went out from under me (due to nerve damage, it collapses under me sometimes, don't know how else to describe it) and I slammed right on the knee. Ever since, it's been pretty messed up, but the VA won't do anything other than x-rays, and have basically told me to just be thankful that I'm alive, and that with injuries as complex and extensive as mine, I need to just adjust to a life on narcotic painkillers.

Honestly, that kinda ticks me off. I've done a lot of research, and pushed my case with the VA, until they finally conceded that the only surgery that would possibly work would be a fusion, but there'd be a high risk of failure due to my weird bone marrow issue. I pushed and said lets just hack it off, because if you just amputate from the start, we'll be good to go and I can get back to life.

I want to run again so bad it's like a sickness in my soul. I used to run 6-7 miles every other day, and weight train on the non running days. Being this crippled wreck of a person who can't even pick up my own kid to cross the street without having my vision red out with pain... I don't want to whine but it's really been driving me up the wall. I talked to several civilian doctors who all said I'd be a good candidate for amputation, not least because I've kept myself in the best physical condition I possibly can, considering that my mobility is strictly limited. In all honesty, I'm willing to face the specter of phantom pains, because in my books, I'm already in so much pain every day that I'm looking at a life on opiate painkillers, and if I could choose between in pain and gimpy and in pain and running again, I'll shoot for the running option please.

My one real fear though, is that I'd lose what little strength I do have left. My son is profoundly autistic, and he tends to get himself into all sorts of scrapes that require rapid rescue. I can't really run at all, but if he were in danger, you can skippy well bet I move at a pretty good clip for short distances. I also run a ranch, and have to do heavy labor such as throwing sheep to the ground to shear them, and digging pits, trenches, etc. I run heavy equipment for the big stuff, and I do have occasional help around the ranch with things, but I'm pretty nervous, especially when I handle the rams. Right now, I pay for everything in extreme pain, but I can still do most of it. The downside is I'm usually down and good for nothing for a few days to a week after I do something heavy duty, and I just can't see spending the rest of my life like this. As is, I have to hire help for a lot of stuff that I really feel like I should be able to do, partially because I'm always scared I'll break the dang leg again with all that hollow marrow. I do have a partner, but I'm effectively a single parent, because my partner is usually gone abroad or beyond on work, and even while local, is only here a few hours out of each day. However, I know my partner can arrange for time off or work from home during my recovery time from surgery, but it would be a bit of a torque. If it makes any difference, my partner is really pushing for this too, and supports me wholeheartedly. Matter of fact, the majority of my family all feel that amputation would be the best possible solution to my situation, and I know I have a good support system for post op from them, even if it requires them to fly here or take the train to stay with me and help me watch after my lovely, beloved demon-child.

I found a prostheticist guy local here who is a stumpy himself and who I really like, respect, and feel like I have the utmost faith in him. He's really pulling for me with my battle against the VA, and he doesn't bat an eye over the fact that I'm a female combat vet, which is more than I can say for the docs over at the veterans hospital. I managed to win a small victory and got the VA to agree to let me seek more local care, since I live in a remote rural location. They're going to send me to a local university hospital, and I hope to find less resistance there. If I could get them to do the surgery, and the local guy to do the fitting, I think I'd be one happy lady. However, I'm still scared of losing even more than what I've already lost. As for the prostheticist guy, he tells me that the only worry he has is my knee. We don't really know what's wrong with it, and I've been trying to go without the brace for short periods every day to work the muscles back up in it. I've also been doing a lot of exercises and what not in order to build the strength back in it, but it just feels a little shaky, almost as if whatever held it straight is missing on the inner side, and it twists around without my control. I don't know if that's because of muscle damage, or because of nerve damage.

So for the past few years, this has been my story. I finally figured I should unscrew from my prideful ball of self sufficiency and hurt here, and come talk to people who've been through something similar. I'm occasionally mannerless but I swear, I don't mean anything bad by it, I just spent too many years in the Army and my civi manners are still evolving. I hope I don't offend anybody here, and I hope I can hear some experiences to help me figure out if I'm going to be able to swing this. Sorry for the wall of text, this has been building up a while.

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Hello Bean, welcome to our forum. I want to thank you for your service. Sounds like you've been through a lot. Amputation isn't an easy decision to make. Though a lot of docs believe it to be failure, it is sometimes the best outcome for many of us. I, for one, had to make that decision in order to get on with my life. I've never regretted it, though there were times when I wondered. There are days when you have nagging pain or soreness. There are days when you can't seem to get comfy in your socket. There are days when the phantom pains drive you crazy. There are those whose phantom pains are with them every day. There are those, like me, that are rarely bothered with them. Most days for me are painfree. I can do anything I want to do. I hardly notice that part of me isn't my own flesh. I wear my leg 16 hours a day.

I'm glad you found a prosthetist you feel comfortable with. I'm also glad he happens to be an amputee. He should be able to give you all the information you need. Amputation is 10-30% harder for every joint you lose. If it's possible to save your knee and still have a functioning residual limb, it would make living with amputation easier. It isn't worth it though if the knee is trash. You will end up with more trouble down the road and possibly need a revision to an above knee amputation. If the knee can be stronger through a replacement surgery, you might try that first.

As a BK amputee, you will be able to do most of the things you describe. The only limits to a BK are those they place on themselves. I can't speak for AKs. I know quite a few who do some fairly radical things. It is just harder for them as they have two artificial joints.

Good luck. I hope you find an understanding team who can work with you through this.

Neal

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Hello Bean and, may I also say from me and my wife, thanks for your service. I am an RBK due to something like a congenital issue that manifested around 12 years old. I decided in 2002 that my life would be better as an amputee. I have been on heavy opiates since about 13, so I understand how you feel about those. I have never once thought my choice to amputate was a bad thing. Especially since it led me to my wife :) I had amputation surgery and joined the Park City Disabled Ski Team 6 weeks later. It's all about your attitude and drive.

Life as an amputee definitely has its trials. I have had surgery twice now to have some over-active nerves removed that were causing significant pain. I have a running leg, and it feels so great to get out and run, although I haven't used it for quite awhile due to the nerve pain. I am pretty well recovered from that now, but I need to build my strength back up. The strength in an amputated leg does deteriorate due to the lack of use. My wife keeps telling me that I should exercise my upper leg more, but I guess I just don't have enough discipline. My left leg is rather over developed due to the compensation. When I am feeling good, nobody notices I am an amputee unless I have shorts on.

I have been on and off opiates throughout my life. Right now, I am pretty low on the opiates and we are trying for me to be opiate free in the near future.

Being an amputee has it perks. Such as, I am a pirate with a real wooden leg for Halloween and you get the best parking spots.

My wife and I are rooting for you, we are very glad you have such a good support system. I have worked with a number of people who have been looking at amputation or have recently had the surgery. If you have any direct questions, don't be afraid to PM me. My biggest piece of advice is to put your prosthetist and your orthopedic surgeon in the same room to discuss where (assuming you decide to go for it) the cut will be made. I did this and I am very thankful I did as this dictates to a degree what type of prosthetic equipment you can have. You need enough room to put a high activity foot but also enough of your leg left that your socket is comfortable. My personal opinion for a suspension system is vacuum and I will never go without it!

From your story, my one big worry for you is the bone marrow issue and if it will keep climbing your leg even after amputation, and your knee. As for your knee, I think Neal explained that quite well.

Good luck.

Stubby and Wife

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Hi, Bean, and welcome to the Forum. I'm a left BK--have been for going on seven years now. I'm an elective amputee...chose to lose the leg after a year of repeated failed attempts to repair a fracture in my foot. For me, it was a good decision and I've been active and basically pain-free ever since.

A number of our members have some very demanding jobs and/or lifestyles, and some of them are AK amputees...I hope some of them drop in here to offer their perspectives for you. I know of at least one woman farmer who I'm sure will be along to give you some advice on living a rural amputee life.

I agree with both Neal and Stubby and the advice they've provided. I'd also really, really recommend that you try and get your potential surgeon and prosthetist together to discuss your options...and if you have a doctor who has special expertise in your bone marrow issues it would probably be good to get them involved as well. I've found it's important for someone considering and/or living with amputation to truly be involved and active in their own medical treatment. Make sure that you can communicate well with all of your team, and don't let them "write you off." It sounds like you already have some experience "taking charge" based on your dealings with the VA, so that's something in your favor.

Don't apologize for the length of your post...getting ALL of your situations and questions out there is the best way to make up your mind about how to handle all the choices ahead of you. So go ahead and post away...we're a friendly and helpful bunch here, and we want to make sure that no-one has to enter this amp-life unprepared! :smile:

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Hi Bean, Welcome to the forum, and thank you for protecting this great nation and all in it........It is much appreciated...

I'm Higgy, a left bk, since 2002, and the female "farmer" on here....At the point that my accident happened, my husband and I were the "workers" on this small family farm and care givers to my aging father...

I won't deny that things are different as an amputee... One of the things you will find, from personal experience is that these prosthetics are built/classed for your body weight.. I noticed a vast difference any time that I carried full feed buckets, hay bales, feed in the 50 bags, etc. We were running quite a few cattle at the time of my accident as well... I had a lot of other injuries that have/had an effect on what I do.... I can still move hay bales with the best of them, carry feed, and all that comes with those things.. We decided to get rid of most of the cattle when my husband had to start having joint replacements. He almost got trampled one night at the feed bunk after falling. Things are do-able, but they won't be easy in the beginning... You will have to first learn to function on your prosthetics, build your strength and resistance up.

I am still driving tractors, trucks, etc anything that is required. I do, however, do them differently. That fact that prosthetic's "load" according to weight for the way they are to respond will be one of the things that you will have to deal with..especially trying to pick up sheep for shearing, etc. You would want to consider a good, responsive foot... There are feet that can respond to terrain, etc, which I'm sure that your friend the prosthetist can give you answers to your questions about that. It might be a good one to raise with him at any point... You know that you will need a foot that allow you to travel over varied terrain,(believe me, with a prosthetic foot, you will notice even the smallest hoof print or change in terrain) and one that allows for the varied weight changes that you are going to need.

Like me, you won't need a "girly" foot, you want one rugged enough to take what you throw at it...

I will be happy to answer any questions you have, either her or pm me if you wish.. I hope that things go well for you, and that you don't have to deal with much pain....

Welcome among us, and I hope that you are finding some of the answers that you need here....

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Hi Bean,

You sound like one brave woman. Like the others I would like to thank you for all you put out and lost for your country. As you describe your injuries I can actually picture what you are describing. I was a nurse in Viet Nam during the American War there and saw lots. A couple of suggestions with the VA--I also have a disability from them rated at 70%. First, have you talked to the Ombudsman--the person designated at the veteran advocate? Some of them are great--some not so, but it is worth a try as they would fight your cause and thereby reducing your stress. Save every piece of paper the VA gives you even if you think it is unimportant--the VA, as you most likely discovered, is a stickler for detail. Is there a group similar to Viet Nam Veterans of American?. They also help you fight with the VA--if no other organization talk to VVA. I can't imagine they won't help you. Finally, it seems like there has been much negative press about veterans care during the war--I now live in Canada and don't hear all the US news. The government hates bad press. As a last resort take your compelling story to the press. How you have been treated is unfortunately VA practice. Wear the vet down and s/he will give up and go away. You have earned good care and more so deserve it--that was a hard point for me to believe. From what you said you should be 100% disabled for the VA--just keep appealing.

I am a RBK amputee from a car accident 7 years ago. I had repeated surgery for three years and finally I demanded they "just take it off." Life, after the first year has been just about normal--doing what I want/need to do. I don't think I could haul a nhay bale, but I couldn't before the accident. :rolleyes: But I do manage to get boxes of heavy tiles up six steps--I just do it differently than pre-accident.

You have great spunk and that will get you through.

Peace, Beth Marie

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Hey, I wanted to say thank you to everybody for the welcome and the advice. And a real big thank you to Higgy--you pegged right on the head some of what I was worried about. I need to finish writing a paper before deadline tonight, and then I'll come back in and reread what all of you have put out here for me.

Thanks for the encouragement, and thanks for the honesty, everybody. I really, really appreciate it.

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Hi and welcome. I am a LBK - elective due to deformity - and it was the best thing I could have done. I appreciate that as an AK it will be harder but as you have heard on here a lot is possible. I am one of those who rarely suffers from phantom pain and generally the only reason I am in any pain is because I have done too much and the rest of my leg that is still deformed protests (the actual stump is usually the last thing to start to hurt). It is not an easy decision but sometimes it can be the right one - feel free to come here with any questions no matter how small as invariably someone will have the answer.

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Hi guys, rough couple of days here, it was the 8th anniversary of the incident that left me injured yesterday and I'm kinda a basket case around this time of year.

I have had surgery twice now to have some over-active nerves removed that were causing significant pain. I have a running leg, and it feels so great to get out and run, although I haven't used it for quite awhile due to the nerve pain. I am pretty well recovered from that now, but I need to build my strength back up. The strength in an amputated leg does deteriorate due to the lack of use. My wife keeps telling me that I should exercise my upper leg more, but I guess I just don't have enough discipline. My left leg is rather over developed due to the compensation. When I am feeling good, nobody notices I am an amputee unless I have shorts on.

About how long was it until you could use the running leg? Was it nerves in the socket area that caused the pain? When you use the running leg, have you ever had problems with security in it? Did it take you a while to get the confidence to run, or were you just damn the bruises lets burn? My good leg is seriously muscled, and I've been trying to keep my bad thigh in good shape. My pelvis is a little messed up, so I don't think I'll ever be able to ride a horse again (another one of those things that drives me nuts if I let it) but I can rotate forward and backwards fine. No jumping jacks in my future though.

Hi Bean, Welcome to the forum, and thank you for protecting this great nation and all in it........It is much appreciated...

I'm Higgy, a left bk, since 2002, and the female "farmer" on here....At the point that my accident happened, my husband and I were the "workers" on this small family farm and care givers to my aging father...

I won't deny that things are different as an amputee... One of the things you will find, from personal experience is that these prosthetics are built/classed for your body weight.. I noticed a vast difference any time that I carried full feed buckets, hay bales, feed in the 50 bags, etc. We were running quite a few cattle at the time of my accident as well... I had a lot of other injuries that have/had an effect on what I do.... I can still move hay bales with the best of them, carry feed, and all that comes with those things.. We decided to get rid of most of the cattle when my husband had to start having joint replacements. He almost got trampled one night at the feed bunk after falling. Things are do-able, but they won't be easy in the beginning... You will have to first learn to function on your prosthetics, build your strength and resistance up.

I am still driving tractors, trucks, etc anything that is required. I do, however, do them differently. That fact that prosthetic's "load" according to weight for the way they are to respond will be one of the things that you will have to deal with..especially trying to pick up sheep for shearing, etc. You would want to consider a good, responsive foot... There are feet that can respond to terrain, etc, which I'm sure that your friend the prosthetist can give you answers to your questions about that. It might be a good one to raise with him at any point... You know that you will need a foot that allow you to travel over varied terrain,(believe me, with a prosthetic foot, you will notice even the smallest hoof print or change in terrain) and one that allows for the varied weight changes that you are going to need.

Like me, you won't need a "girly" foot, you want one rugged enough to take what you throw at it...

I will be happy to answer any questions you have, either her or pm me if you wish.. I hope that things go well for you, and that you don't have to deal with much pain....

Welcome among us, and I hope that you are finding some of the answers that you need here....

Higgy, you really pegged on a lot of what I was worried about... mostly hay, feed, and whether or not I'd ever be able to shear or drench the sheep again. Due to the nerve damage, I mostly drive and run equipment from the knee... something which can make for interesting moments in the excavator from time to time, but overall it is what it is. I do have a few degrees of mobility in my ankle, but not much, and I have to be pretty careful on uneven terrain. How do you manage rubber boots with your prosthetic? Do you put the leg in the boot first and then put it on all together? Because of the limited movement in my ankle, I can only get into a few different pairs of shoes anyways, only ones with a big enough shaft, which usually means I'm slipping around in Bogs about three to four sizes too big. How quick are you on your feet around the cattle? Did you find you were still quick enough to avoid being stomped on by a suddenly turning animal, or do you have to give them more clearance? We live on very mountainous terrain which is highly uneven from running cattle for 25 years, not to mention lots of hidden tree stumps in the pastures. The sheep tend to stomp out the humps pretty good with their little feet, but it's definitely rough country no matter how you look at it. I hadn't even thought of the load bearing aspect of engineering the leg, so I'm glad you brought it up. There are so many things I feel so nakedly stupid about, and I'm glad you guys are willing to answer dumb questions with such good nature.

Hi Bean,

You sound like one brave woman. Like the others I would like to thank you for all you put out and lost for your country. As you describe your injuries I can actually picture what you are describing. I was a nurse in Viet Nam during the American War there and saw lots. A couple of suggestions with the VA--I also have a disability from them rated at 70%. First, have you talked to the Ombudsman--the person designated at the veteran advocate? Some of them are great--some not so, but it is worth a try as they would fight your cause and thereby reducing your stress. Save every piece of paper the VA gives you even if you think it is unimportant--the VA, as you most likely discovered, is a stickler for detail. Is there a group similar to Viet Nam Veterans of American?. They also help you fight with the VA--if no other organization talk to VVA. I can't imagine they won't help you. Finally, it seems like there has been much negative press about veterans care during the war--I now live in Canada and don't hear all the US news. The government hates bad press. As a last resort take your compelling story to the press.

I went through the advocate's office and then hooked up with an OIF/OEF advocate who is utterly horrified that I'm looking at amputation. She did manage to get some pressure put on the ortho office, but she flat out won't help me rally for surgery. Her words "You need to realize that amputation is NOT an option." So... well, I'm going at it the way I always do--by research, persistence, and laying out as logical an argument as ever, since that seems to be the only thing that gets heard. Honestly, I'd rather do anything than ever talk to the media again though. There was a real storm around me at first as being a combat related injury in a female vet, and my mother is a big peace protester so they tried to pit us as war hawk daughter and peace protester mom. It was horrible, it cost me a lot of friends and some career options in the service, and I'll never again speak to a reporter if I can help it.

Once again, I want to say thanks to all of you guys who take the time to answer these introductions. It's much appreciated.

I also wondered... how did you all who had elective surgeries break it to your families? When I first talked about it to mine, some of them were supportive, some were horrified, and well, now they're about 99% behind me. I don't imagine everybody has been so lucky. How was it for all of you?

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Bean, I broke the news to everyone over the phone. In part that was because I was hospitalized at the time and I had only a few days to decide whether the surgery that was scheduled a few days down the line was going to be Attempt #5 to repair my fracture or whether it would be the amputation of my left foot and ankle...and in part it was because once I'd made up my mind on the amputation, I didn't want to see folks' jaws dropping and eyes bugging out when I told them of my choice.

So I spent a day on the phone, calling folks and saying something like, "Well, I've decided to stop trying to fix this foot and we're just going to cut it off so I can get on with life." Mostly I got stunned silence in reply, then something like "Really...?" Then I explained that, while it wasn't a choice I was enthused about having to make, I was enthused by the thought of knowing that I only had one more surgery to face and then knowing for certain just what I had to work with in order to get up and around again.

I learned some time later that most folks were stunned not so much by what I'd decided to do as by how "relieved" I sounded about it. So, many months after the amp, I had to explain that I really was relieved: I was sick and tired of the pain, the infections, the lack of mobility, the repeated surgeries, the insane familiarity of the feeling of that fracture recurring, the lack of a real life. From the date of the amp onward, everything I did was actual progress, instead of a long and slow decline. By then, I was back "up and around," working, taking care of myself, and even the people who had doubted my decision understood that I considered losing the leg a small price to pay for what I'd received in return.

I think being sure of your decision yourself makes it easier for friends and family to get on board and be supportive. I hope that works for you!

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Hi Bean and welcome to the forum.

I'm Ann and have been a bilateral below knee amp for just over forty years, luckily for me I didn't have to make the kind of decisions that you are having to make regards your leg, though I did have a revision amp a few years ago on one side and I spent some years deciding on that,even as an already amputee, like you I didn't want to make things worse, but had reached the point where I was losing much of my mobility, so it got to the point where there was no option if I wanted to continue walking.

From what you've written Bean you sound like you are a pretty active person and I have no doubt that the odds are that you would probably manage pretty well as an amputee, most of us do live pretty normal lives and as you've probably read from the postings on here most of us feel we do pretty much ok with most things, which we probably do, we all find ways of doing things and for people like me who have been more years at it than not it does all become normal ..... though every now again I will be talking to a non-amp and something they say or suggest will kind of stop me in my tracks and realize that for me things are very different and that is probably what I think people considering elective amp surgery need to really think about.

The technology today is pretty good but even the best does not do everything that the natural foot or leg does, and whatever level you have your surgery done at, your levels of mobility will be dependent on the condition and length of your residual limb as well as the strength of your joints and muscles above that. I slightly disagree with Neal's comments (sorry Neal) "that the only limits to below knee is those they place on themselves" ... in my experience whilst walking is easier because you have your knee joint, all levels of amputation present their own challenges, and b/k amps often experience problems that are different to a/k's, but can equally present problems that make walking difficult, particularly if the residual limb has scars or other injuries.

With the injuries to your leg that you describe, I think your prosthetic guy is wise to be mentioning the concern over your knee. If you want to reach full potential mobility wise as a b/k amputee,a lot will depend on the condition and length of your residual limb and its quite likely your knee, or your patella will take a fair bit of your weight and strain when walking. So do make sure that they do scans, x rays and the like and check out the condition and viability of what will be your residual limb and whether the prosthetist thinks it will be up to the pressures of walking as a b/k amp, especially if you want to do some of the things you have mentioned, makes sure they understand the level of mobility you hope to gain. I say this from my own experiences, as when I had my accident on one side they amp'd below the knee but thought I would probably lose it, I didn't, but it was damaged and needed skin grafting, but it has always given me problems, I had a revision and again have kept it, as a bilateral it is a definite benefit for me to keep the knee, but it doesn't allow me to do as much as my other residual limb on the other side does.

Only you know the difficulties you are experiencing now, and I am not meaning to sound negative, because things are do-able but I get the feeling that some of the activities that you are suggesting are important to you, like running and heavy farm work might potentially prove more difficult with a prosthesis if your residual limb isn't in a good condition, or you have other injuries as just walking on a prosthesis takes it toll on other joints. Also your comments about the scarring you have and your self consciousness, again there will be obvious scarring with amp surgery and this is a problem to some amputees, usually not so much when we are able to wear our prostheses and walking well or perhaps in the process of rehab where things are building up towards walking etc.etc., its more often the times when things are not going so well and we are unable to wear the prostheses for whatever reason, its at these times when things become more difficult or we may be a bit more dependent, because its more noticeable, people do notice and sometimes make comments, so do think about that aspect too.

My advice would really be to get all the injuries to your leg etc. checked out, ask for scans, circulation checks, ultra sounds, x rays etc., get as much info as you can, also get the surgeon and prosthetist to talk to each other so you get some realistic idea of whats going to work best for you as to your possible level of surgery ... and also what level of mobility/activity you can expect from that.

Do hope that everything goes well for you.

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