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stevejw

Amputation or not?

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Hello.

My name is Steve and I am looking for some general advice, please.

I am a 42 year old guy who had a total knee replacement inserted four years ago following years of knee problems. Unfortunately the TKR hasn't worked out in the way I would have liked and I am now faced with a reasonably tough decision i.e. whether to keep the TKR and all of the associated pain and mobility problems that it presents or proceed with an above-knee amputation. I have been looking at this for a while and have received contrasting views - my orthopaedic surgeon (who performed the TKR) recommends keeping the TKR until it fails completely (probably another 4 years) on the basis that a painful knee is better than no knee and proceed with either a fused leg option or amputation at a later stage. In comparison I have received advice from a prosthetic limb specialist who says that with hard work and some commitment a aka and prosthesis can achieve good levels of pain-free mobility etc.

Daily life is a bit grim although I work full-time but am increasingly dependent on walking ais to get around and high doses of pain killers and sleeping tablets etc.

Clearly this is rather difficult decision and I was wondering whether anyone had similar experiences, and, if so, whattheir views are?

Many thanks for readingthis.

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blimey, <_< that's a tough one, and also a decision only YOU can make, as you know.

I'm a below knee amputee with limited bend at the knee, reletively pain free and getting some semblance of 'normality' (whatever that is) after 2 and a half years. I consider myself quite lucky.

If you look around and read all you can about AKA. you will find loads of people that are doing fine with minimal pain and an active life, BUT.. you will also find plenty out there who are in constant pain and have a million mobility issues to deal with.

I guess I'm trying to tell you what you already know Steve,,, You wont know how much better or worse off you'll be until you weigh up all the facts and prognosis', make your decision and don't look back.

One thing for sure though, we'll all be here to talk to whatever you do.

xx

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Hi, I can't really answer your question as I am LBK but I do know that for me amputation (for congenital deformity) was totally the right answer. I am sure some AK's will be along soon but in the meantime only you can weigh up the pain you are in now (and the difficulties you have) against the problems an AK has although potentially with a lot less pain.

One thing to bear in mind is something I have heard several times and that is that to an orthopaedic surgeon amputation is considered a 'failure' and they will do everything they can to avoid it even sometimes beyond the point where it would have been a far better option.

Hope you get some more help soon, but bear in mind we are all here to give whatever support we can.

Sue

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Hi Steve

I'm AK/BK and I've had a TKR in my BK...and a THR in my AK. After a very rough start & lots of hard painful exercises, my TKR is working very well and I now have a 123 degree bend and very little pain from the implant.

It's a horrible situation to be in isn't it? :( But, on a constructive note, you need to do what you're doing & thoroughly research why your TKR failed and whether they could effectively replace it with another make of implant (mine was bespoke). On the other hand, you need to get the advice of several experts in the prosthetic field and of us amps.

Having a TKR or a fused knee is no picnic, but then having an AK isn't either. Before you embark on something like that you need to find out the best form of amputation & find a good surgeon. You also need to make sure that you get adequate pain relief (and I mean an epidural not just tabs) before, during and after your surgery; as you have pain now, you are likely to have phantom limb pain afterwards, and that's definitely no picnic! :ph34r:

There are lots of AK's on this board who will be willing to offer you advice...it's ALL good btw. :D But, you could also do with talking to Roz (who planned her BK in great detail) and people like myself who have had a TKR (I'd be happy for you to PM me).

After you have spoken to just about everyone you can talk to about both options then make a list on what you really want, Steve. Then, a few days later write down all the positive & negatives to both options you can of. Take your time (a few weeks) and then decide. There is no good or bad decision here...it's all dependent upon what you want.

Take care

Lizzie :)

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Hi, Steve and welcome to the site, great to have you aboard.

You do not state your age or general health; this could be relevant to your long-term outcome.

I was interested in your story so far as it seems not too dissimilar to aspects of mine. I apologise if this turns out to be a long post but I feel it is rather complex and warrants as full a response as I can manage. Please remember these are my experiences and everyone is different.

I had lots of operations on my leg before opting for above knee amputation. 30 in all! Including partial knee replacements and 2 full knee replacements, all on the same knee. :ph34r: None of them worked. I ended up having my knee fused and lasted like that for 7 years but I can tell you that the pain from a fused knee is no less than the pain before I had it fused. The only improvement was that my leg was now stable. The process of having it fused is extremely painful and long. I had an Ilazirov frame on for eighteen months and contracted MRSA in all my pin sites. To see picture click here lazirov

Note it should read 18....not 8 months :( (Error on site)

You do not state your age or general health; this could be relevant to your long-term outcome.

I was interested in your story so far as it seems not too dissimilar to aspects of mine. I apologise if this turns out to be a long post but I feel it is rather complex and warrants as full a response as I can manage. Please remember these are my experiences and everyone is different.

I had lots of operations on my leg before opting for above knee amputation. 30 in all! Including partial knee replacements and 2 full knee replacements, all on the same knee. None of them worked. I ended up having my knee fused and lasted like that for 7 years but I can tell you that the pain from a fused knee is no less than the pain before I had it fused. The only improvement was that my leg was now stable. The process of having it fused is extremely painful and long. I had an Ilazirov frame on for eighteen months and contracted MRSA in all my pin sites. To see picture click here. That was before I got to learn to walk again.

Having a fused leg also effects the rest of your body too, as your posture is totally changed. I ended up with my leg 5cm shorter. You will never be able to sit comfortably; you will always have to perch on the edge of seats, as you obviously will not be able to bend your leg at all. The bottom of your leg will swell and fill with fluid, as the use of your calf muscles doesn’t pump it back up. In my experience you will still have pain.

No surgeon can say that you will be in less pain following any operation. It’s dependent on lots of things.

Like you I got to the stage where they were suggesting above knee amputation. Note I opted for fusion first as at the time I had fought so long and hard to keep my leg I wasn’t ready to lose it.

Before I made my decision I did lots of research and had three consultations with different orthopaedic surgeons, at different hospitals, to give their opinions. I also had a consultation with the rehabilitation consultant at the limb centre. He not only gave his opinion he was able to tell me about life as an above knee amputee and show me a prosthesis. I strongly suggest you do the same, do not rely upon one surgeon’s say so. And make sure the surgeon who does it is an expert in amputation.

You should also be clear as to why your knee replacement has failed.

I underlined the above, as it later became clear why mine had failed. I had awful problems following amputation and had to have a further three revisions (surgeries) on my stump, in the space of a year in order to get a prosthesis and still I suffer terrible pain. I have only just got prosthesis, almost 2 years since amputation and even then, it’s not right yet. It turns out I have a genetic condition called Ehlers - Danlos Syndrome. It is a connective tissue disorder. Joint replacements do not work on people with EDS. By no means am I suggesting that you have this but you need to know why your knee replacement has failed in order to make an informed decision. If I had known that I would have had these problems following amputation maybe I would not have had it done?

As far as pain goes, my general pain now is just as debilitating, but it’s just different to my pain before. You also need to look into phantom pain, as phantom pain is directly linked to the amount of pain you suffered prior to amputation. There are also issues about which anaesthetic you should have prior to and during your amputation, if you should have it. Read past posts on this site. I think it is unrealistic to expect to be pain free.

Being an amputee is no walk in the park. Yes, you will probably read on this site about people living very active lives and doing amazing things. I may be wrong…………..but I feel that it is not the norm. Living with a prosthetic limb is very hard work. I read this and other sites prior to my amputation and I found it inspiring, but I now know that my expectations as a new amputee were far too great. Maybe I had false hopes about what it was going to be like and because I was in so much pain I imagined that it couldn’t get any worse……..Well, for some it can.

I hope I haven’t painted a totally black picture…..I just hope it’s an honest one, it’s my experience. I’m not a paralympic athlete but walking in my prosthesis without it hurting too much is like winning the gold medal to me but it’s a million miles from where I thought I’d be two years down the line.

You have to weigh up the advantages and disadvantages and then remember that even if the advantages outweigh the disadvantages there are no guarantees! There isn’t an amputee handbook.

Others may disagree with me because their experiences are different to mine.

Good luck with your decision, it’s a tough one….I know…I’ve made mine.

If you want to PM me please do so.

Lynne

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Steve that is a horrible decision to have to make.... :( ....(I had no choice in my case.).... but definately will say I would hate to be the one who has to make it; if I had to, I would never amputate until I was absolutely sure the pain was beyond my capability to stand. I would go to a pain clinic or something along those lines first.

Do you have any idea why the TKR did not work? Do they ever do this proceedure twice? There are alot of very smart amputees on this forum ;) who can weigh in on your situuation; but as Hazel has already said only YOU can decide which way you want to go. I will keep you in prayer over your problem.

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Welcome to the Forum Steve.

I think you've come to the right place :)

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Guest bearlover

Hi Steve, welcom ! I'm a LBK for 3.5 years now it will be 4 in July. July 14th to be exact. I had no chilce in my decision I had developed a major bone infection after many years of bone graphs and unsuccessful operations form a congentila birth defect..It is odd because all my life peole would tell me "you would be better off without that leg" :o I also had to wear a brace and had a ankle fusion. I had a lot of pain all my life, I was told one of the bebefits of a amputation would be pain free and active. Along with saving my life from the bone infection. Well so far it has been anything but. I still have pain 24/7. In some ways Iam worse off then when I had a leg that was not to functioable. My real leg was quite smaller than my "good" leg 4 size difference in shoes and 3" shorter. The Dr. should have never promised me that I would be pain free, I was and still am very dissapointed. I was told that if a amputee has much pain before the amputation he or she will continue to have pain after. I do try very hard, I work part time as a teaching assistant in a first grade. Children are my passion in life. I have a good husband and family to support me, But I an the one who has to to the work and sit back in self pity. Something taht was never allowed as a child. And I thanks my parents for that..It is a tuff decision because their is no turning back. BUt like I said I had no choice in the matter. best of luck to you. This is a excellent fourm for information and sharing and caring our experiences and life..we always have a few good laughs too!

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Hello Steve. Welcome to the forum. I have opinions on many things, but they are based on my experiences, and not just something that I make up. I did not have to make the choice on having my leg amputated - it was made for me. I went in to the hospital with a perfectly healthy leg, (to fix a graft in the groin), and got out a month later without a leg, (RBKA). During that time, I was pretty much out of it.

It is my nature to "do my homework", and ask an awful lot of questions. To the point of making a complete pest out of myself. Then - and only then - do I make my own decision. No one else's but mine. This is because, if something were to go wrong, I can live with my mistake. I don't want to have to live a life wishing that I had done it my way.

My wife is the only one that has the power to persuade me. Her judgement, I respect and listen to - but..... I still mostly do it my way, even though the idea started out to be hers.

Listen to people, and if you agree with them, THEN make the idea your own, and make it your decision. IF YOU CAN'T MAKE THEIR SUGGESTIONS TRULY YOUR OWN, THEN LISTEN TO YOURSELF.

My only advice is to never do something that you haven't been convinced is in your best interest. You are the one that will have to live with whatever decision is made - forever.

But then ..... I try never to give advice - just experience - and listening to advice is something that I am very experienced in. I am just not very good at taking it.

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Hello.

My name is Steve and I am looking for some general advice, please.

I am a 42 year old guy who had a total knee replacement inserted four years ago following years of knee problems. Unfortunately the TKR hasn't worked out in the way I would have liked and I am now faced with a reasonably tough decision i.e. whether to keep the TKR and all of the associated pain and mobility problems that it presents or proceed with an above-knee amputation. I have been looking at this for a while and have received contrasting views - my orthopaedic surgeon (who performed the TKR) recommends keeping the TKR until it fails completely (probably another 4 years) on the basis that a painful knee is better than no knee and proceed with either a fused leg option or amputation at a later stage. In comparison I have received advice from a prosthetic limb specialist who says that with hard work and some commitment a aka and prosthesis can achieve good levels of pain-free mobility etc.

Daily life is a bit grim although I work full-time but am increasingly dependent on walking ais to get around and high doses of pain killers and sleeping tablets etc.

Clearly this is rather difficult decision and I was wondering whether anyone had similar experiences, and, if so, whattheir views are?

Many thanks for readingthis.

Hi Steve,

Have you thought of seeing another surgeon for a second opinion??

I had a giant cell bone tumor 20 years ago, the size of a grapefruit, because it wasn't diagnosed for 9 months. I had the first total knee transplant from a cadaver. (my surgeon also offered me the choice of amputation or fusion) I went 6 years before that began to collapse. I had a total knee replacement on top of the cadaver bones, which then lasted 9 years. It began to collapse (I still had the ligaments of the cadaver and they went) I considered amputation then, spoke to a prosthetist and other people with amputations, but my doctor said let me try again, and I had another knee replacement. For three years, I was better than I ever had been before! I didn't need to wear a heavy brace anymore, as the knee replacement was pretty heavy duty. May of last year, my knee became infected. I went on intravenous antibiotics, and tried for 6 months to save my knee...using traditional methods as well as non-traditional. I was in a lot of pain, had wicked spasms and my knee got to where it couldn't support me. My surgeon said he couldn't do anything to help me anymore. I wasn't sure what to do, but decided to go ahead and have my leg amputated. (above knee) I was very scared, but for me it was the right decision as the infection was still there and could've possibly gone systemic.

I am now three months out from surgery, two months out from getting my leg. Knock on wood, I have been weaning myself off of pain meds, (still using a little ultram) have phantom sensations, but not a lot of pain-despite my surgeon not listening to me regarding my wanting an epidural; I have been able to successfully deal with my insurance company regarding my prosthesis; (apparently they will not pay for microprocessor knees as they are not medically necessary) and all and all am doing fairly well, though I certainly have my ups and downs, and my energy level is still low, but getting better.

Anyway, tough decision for you, and unfortunately, we can't read the future, or this stuff would be much easier!

If you have any questions of me, please ask.

Susan

PS I'll be away for a week, with limited internet access....my first plane ride since amputation...wish me luck!

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Thank you all for you comments, advice and support - what a great bunch you all are.

For those of you that have asked - my tkr is failing due to substantial soft tissue damage associated with previous surgerical interventions (so my knee is unstable and reacts poorly to any activity). I have indeed sought opinions from more than one orthapaedic surgeon and the message has been largely as I described in my initial post. I am however correseponding with a chap in Vancouver who has dealt with similar patients in the past - he may have an alternative but I'm not holding my breath....

I always knew that having a tkr at such a relatively young age would potentially result in an amputation at some point... but I certainly didn't think it would be after just 4 years. Anyway, thanks again - i really appreciate that you have taken the time to write.

Steve

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For those of you that have asked - my tkr is failing due to substantial soft tissue damage associated with previous surgerical interventions (so my knee is unstable and reacts poorly to any activity). I have indeed sought opinions from more than one orthapaedic surgeon and the message has been largely as I described in my initial post. I am however correseponding with a chap in Vancouver who has dealt with similar patients in the past - he may have an alternative but I'm not holding my breath....

Steve, before my TKR, I had one of the most unstable knee joints you could imagine (I'm not exaggerating, at all). Now, I have absolutely no functioning ligaments around my knee joint. I wear a corset & side steels attached to my prosthesis.

Also, if your ligamentous damage is relatively minor, surely you have some sort of ligament rebuild or have a tendon implant? They are doing amazing things with tendons & ligaments nowadays. It seems a shame to have an AK just because your ligaments have failed you. :ph34r:

Lizzie :)

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Exhaust all possibilties before the amputation. It is an irreversible decision. I'm BK so life is much different for me than it would be for you. Talk with other AK amputees if you really want some insight. Find and attend a support group meeting in your area.

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Hello Steve, Welcome to the forum.

I am pretty much in the dark about your condition so I have no idea on what to say so I won’t even try. I couldn’t even imagine what you must be going through at this moment in time so again I have nothing to add on what’s already being said.

But what I do know is something about is living & coping as an above knee amputee.

A bit about me age 47 years, and nothing out of the norm, just your average guy

I lost my leg (left) about 28 months ago, one minute riding my cycle to work next ……………waking up in hospital two days later minus my leg.

S..T! End of the world I thought at the time. My life is over; well I guess I was wrong

My progress to date:-

Lost leg early October

Got first prosthesis leg end of December walking with two sticks from day one.

Week later walking with one stick

Mid January walking with no sticks. & returned to work (12 hour shifts)

February started walking longer distances and “short hikes “in the hills where I live.

March longer hikes and no longer having to “plane the route so thoroughly”. Uneven ground no longer anything to worry about.

Fast forward to now. Still working 12 hour shifts

Still hiking at least once a week, anything from 5 to 15 miles up n down the most breathtaking places that this country has to offer (that includes hills and mountains) in all weather conditions.

I canoe in all waters and regularly “play” in the surf (only in the summer)

And as my favourite hobby is powerbuggying.

I can ride a bike but don’t as I was on a bike when the R T A happened.

I can run but I find that extremely hard work (age thing?) so I don’t, plus I look like a pregnant swan trying to take off.

Basically I do every thing that I did before, just a bit differently & in some cases a bit slower

Downside. For me nothing will ever come close to replacing my real leg.

I can’t stand still for more than 5 minutes without it becoming a strain.

I am still learning all the time.

There is always a better / simpler/easer way of doing things.

I have no real pain at all. (That should be in the good side)

The leg does get uncomfortable and can get “heavy” at times.

I wear the leg from first thing in the morning till last thing at night even working through the night so it can be on for over 24 hours. (Good side)

I get the odd sore spot but deal with it before it becomes a major problem.

Phantom pains, I get them: - zingers, zappers, pins n needles and sometimes it feels like im plugged into the power mains, but they are getting less severe as time moves on. But I have read that if you can get pain free before /during your op you may not get them at all.

I guess what my post is all about is it might sound like the end of the world losing a leg but with care training and a right mind set it doesn’t have to be………….hope this helps from an lak amputee who is still finding his way………Mick

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Guest bearlover

Good advice fron all. I would also speak to a certivied prosthetist for some information too. :)

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Guest bearlover

Mick, you explained your phantom pain perfectyl! I too have the same sensarions. pins and neddles non stop I can always "feel" my foot and it is constantly full of pins and neddles at times it feels like my toes are being cut iff or stabed with a ice pick :ph34r: When the leg is off the sensation is at the end of my stump. Indeed it is not a easy thing..Too bad we can't grow another leg like a frog! :lol:

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Mick, you explained your phantom pain perfectyl! I too have the same sensarions. pins and neddles non stop I can always "feel" my foot and it is constantly full of pins and neddles at times it feels like my toes are being cut iff or stabed with a ice pick :blink: When the leg is off the sensation is at the end of my stump. Indeed it is not a easy thing..Too bad we can't grow another leg like a frog! :lol:

Hi bear lover,

Yes this phantom limb pain stuff really gets your brain working overtime, :ph34r: I’m sitting here right now feeling my foot tingling, whist my eyes are looking at where my foot use to be and seeing nothing.

It reminds me of the other day when I was out walking I put my prosthetic foot into a deep puddle of water , then I actually felt the cold water running down my boot ……………………. Weird :lol:

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Guest bearlover

Mick, you explained your phantom pain perfectyl! I too have the same sensarions. pins and neddles non stop I can always "feel" my foot and it is constantly full of pins and neddles at times it feels like my toes are being cut iff or stabed with a ice pick :blink: When the leg is off the sensation is at the end of my stump. Indeed it is not a easy thing..Too bad we can't grow another leg like a frog! :lol:

Hi bear lover,

Yes this phantom limb pain stuff really gets your brain working overtime, :ph34r: I’m sitting here right now feeling my foot tingling, whist my eyes are looking at where my foot use to be and seeing nothing.

It reminds me of the other day when I was out walking I put my prosthetic foot into a deep puddle of water , then I actually felt the cold water running down my boot ……………………. Weird :lol:

Me too! It can make you mad if you let it..My toes are killing me and they are gone! :lol:

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<_< Have you ever heard of replacing a foot, leg on anyone directly after amputation??? You know as they do with heart, kidney, etc. transplants. :blink::huh:

'BEARLOVER' - do frogs actually grow new legs? Never heard that one....just about a chameleon replacing its tail. :ph34r:

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Well that is what I was told! Some frogs actualy do i'm told.. :P

K. I've heard the same thing - but then, I've heard a lot of things. :D Nothing would surprise me, so your not alone.

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Guest bearlover

:) Well Jim My :lol: husband the scientist says some do and some don't! So I quess that is our anwser! :lol:

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:) Well Jim My :lol: husband the scientist says some do and some don't! So I quess that is our anwser! :lol:

That's good enough for me. :rolleyes: :D

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Once again,many thanks to you all for taking the time to respond, offer sdvice and comment - I am grateful to you all.

What's clear is that different people appear to have quite different outcomes and consequentially their respective outlooks are quite different. I guess what's going through my mind is not just the decsion re 'amputate or not', but also what do i need to do pre-amputation (should that be what I decide to do) to maximise the best possible outcome. SOme have commented about strectching nerves; pain relief etc. All of this provides a completely new dimension to my thinking but i am grateful nonetheless.

Thanks again.

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Hi Steve,

Just a quick note that. I forgot to mention in my last post.

general fitness; it goes without saying the fitter you are the easer it is to get along with a prosthesis so if you do decide to go down the amputation route , try to get as fit as you can before the op. (I know its not as easy as that) but try to do what you can .it will help you later on.

Whatever you decide I wish you all the best

……………..take care……… Mick

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