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RozM

Hello! ...choosing to amputate is tough!

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Hello everybody – I’m a newcomer, attempting a self-conscious introduction!

It looks like I’m about to become an amputee, after living with a “salvaged” right foot for 26 years.

It was a motorcycle accident (a drunk driver pulled into my path) which shattered my right hip and my right ankle, and the doctors fought to save everything (as they tend to do!). My pelvis has done amazingly well – the odd twinge, but still no replacement hip – but the ankle has been the worst of all worlds.

In hospital I nearly lost the foot, but it settled down, and while they tried to set the awful, very-low, tibia and fibula fractures, they couldn’t line things up properly. The fractures also failed to unite, and after 10 weeks – just as they were about to fit me for callipers – I thought “I’m not having this!”, and I began weight-bearing, and, lo and behold, it all united.

However, only when the last cast came off was it apparent how useless my ankle was; it was rotated inwards and angled forwards and outwards, and I had foot-drop and hyperesthesia, probably caused by nerve damage in my pelvis. The only saving grace was that the forward angulation of the bottom of my tibia counteracted the foot-drop, so my foot was almost level. But all the bits of the tibia and fibula had united into one lump, which caused the end of the fibula to articulate in a very odd way, and I’d even had a broken metatarsal that my toe tendons adhered to, making them “clawed” and rigid. The whole thing is three-quarters of an inch shorter than my good leg, and became painful and inflamed when walked upon, even before osteo-arthritis developed. These days, every step is an ordeal.

I’ve struggled on year after year with this awful compromise, and it’s been no fun at all – apart from the increasing pain and debility, I used to have great legs, and in an instant one had became hideously distorted and scarred, and I could no longer wear heels, even with trousers. Perhaps the greatest discomfort has been being emotionally attached to such a horrible and useless leg – if only they had amputated when I’d had the accident, I could have made a fresh start, and spent the last 26 years refining techniques that I must begin with now. But, on the plus side, the idea of an attractively hi-tech prosthesis has always appealed to me far more than the mess I have instead!

I have reasoned that this is what karma is all about! My father was a doctor, so all those who treated me felt an obligation to give me back to him as whole as possible, and, for my part, of course, as long as there was hope, I wanted to keep my foot… Consequently, I’ve been in a kind of denial all these years that amputation would be an improvement, but the pain of weight-bearing has become so overwhelming that in order to keep walking, it’s now a necessity.

…but it’s as if my bad leg plays games with me! While I wear a raised shoe, I can get up without needing it, and I can get around the house without too much pain, so I feel that my mobility is adequate, but visiting the supermarket becomes a teeth-grinding, bad tempered, stressed-out, limping ordeal, which makes me reconsider amputation… But, having read the forum, then I wonder how much pain I would be in, shopping with a residual limb and a prosthesis? Then there’s driving – I can drive OK despite my foot-drop, because I can still push my foot down, and I just pivot on my heel to raise it off the accelerator (I left-foot-brake in my automatic car); yes, I can have my car modified, but then driving other cars is a problem…

Ultimately, it’s the pain (and not vanity!) that has me writing to surgeons, asking for consultations. Pain has compromised my mobility too much now, and I would like to go walking with my friends, perhaps even be able to run again (at least on a treadmill – lack of mobility has sure packed on the pounds!), and just be as pain-free as possible.

I suppose that because I already have arthritic pain and some phantom pain (I get stabbing pains in my toes and wildly itchy patches on my foot, probably a remnant of my former hyperesthesia), and I have ways of dealing with them, then I’m at least partially prepared for some of the ordeals of amputation, but I would certainly welcome any thoughts from all you wonderful, inspiring people! It’s very weird, however, actually planning one’s own amputation – time seems to stop as I contemplate it; this leg is ugly and painful, but it’s mine, and it’s hard to imagine life without it… Also, I don’t know how I’ll grieve for my old leg, when it does go… but I have to believe that, this time, it’s NOT better the devil I know!

I hope I haven’t flip-flopped or rambled too much, but this is the first place I’ve found where such issues can be aired, and you’ve all inspired me so much – thank you all!

Roz.

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Hi Roz

Welcome to this forum of ours, great people from all around the world, and glad you joined us! Grab a seat and get comfy, ask and answer anything you feel comfortable,

I am a RBKA since may 28, 2003.

Lesley

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Hi Roz,

I am unique,

I am so touched and feel such a kindred spirit to your pain and tencacity and determination to make a bad situation work, It just blew me away. That decision was made for me, and I became an above the knee amputee 23 years ago due to a motorcyle accident.

The way you are describing the situation and your excrutiating pain, and lack of mobility, to me amputation seems like the right decision.

If you can make it through the past year of hell you described, then you can make a scucess of your amputation. I have met several people throughout the years that have made similar decisons for similar reasons and without fail they are very happy they did. I am not a doctor, but barring any other probelms you will get back you mobility if you work hard at it.

I have a suggestion to keepin goff the weight (a problem for many amps, start swimming as soon as you have healed up. IT burns calories and help maintain range of motion, it has kept me fit in my 40's

You mentioned that your father was a doctor, and I hope that the doctors caring for you are going consult a pain specialist. IT sounds like your pelvis?? is a problem as well, so be careful pushing the weight bearing There is a whole lot of evidence that preadmission into the hospital for an long term(3 days) epidiral to numb the nervous system can prevent a whole lot of pain. Please Please talk to a pain mamagement specialist before you have the amputation about having an epidural done first.

Keep in touch, We are always here for you

Be strong as you can and then lean on us.

Bye for now

Unique

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Welcome to the forum, Roz. Best of luck in making your decision.

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Welcome Roz. :)

Cat

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Welcome Roz

I'm a 47 year old R A/K, I did'nt have your choice I lost my leg to save my life. I had Nectrotising Faciisitis. I think you probably know the only way forward, you will not be alone :rolleyes: this is a wonderful club full of wonderful people who do and achieve everything!

Fingers crossed for you

PJ :)

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Hi Roz, I'm an rak but my left leg which suffered similar to yours, foot turned in due to sprial tib & fib brake is very frustraing but it is there. As my one good leg so to peak I'm grateful to have it... I however don't have too much pain. A niggle here and there but nothing that renders me unmovable. I hope it gets better for you.

Good luck with your journey

Mel.

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Hello, and thanks for the welcomes!

I can't believe how BIG this forum is! :blink: While there's real-time advice and help, there's so much previous insight and wisdom too - I'll be here for weeks! B)

Unique, thanks very much for your thoughts - I'd never thought of it positively - as making the best of a bad situation - I'd only seen my pain and restrictions as negatives, but your viewpoint makes it easier to be positive about my forthcoming challenges :) . My pelvis is stable now (the screws and plate are still in there! :blink: ), but I'll start swimming ASAP, and will find out about pain management.

Geez, Mel - I'm sorry to hear that your "good" leg is compromised too - I hope it stays as pain-free as possible.

After my first post I found previous posts from others who have also had to make the decision to amputate - I know how they felt, and their stories have helped me be more confident in my decision to go for it, as did your words, Marcus...

Since I at least have the opportunity to plan things, I'm interested in an Ertl trans-tibial amputation - any thoughts or experiences, anyone?

I've been told that Mr Nigel Hawthorne (BMI Hampshire) does it, but does anyone know of other UK surgeons who do? I'm prepared to travel to the US to see one of the actual Dr. Ertl's if necessary - does anyone know how much an Ertl procedure costs?

And does anyone have experiences of Dorset Orthopaedic to report?

Also, as I'll be RBK, I'm thinking of having my car modified by DS&P Mobility - once again, any thoughts?

I'll try to look at the archive for other obvious things, but I'll be needing further wise counsel soon, no doubt! :D

Best wishes

Roz.

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Hiya Roz - welcome. I'm Ally, right above knee amp from South Africa. I lost mine in a car accident in 1995.

Sorry - no advice regarding surgeons and stuff in your neck of the woods. I'm stuck in the arse-end of Africa. WAYYYYY down at the bottom of the atlas.

Hope you enjoy your stay,

Ally

:)

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Hi Roz

Sorry to hear that you've got to make such a difficult decision.

You're most certainly not alone! I've had to make a similar decision - when I was a teenager - and it's not easy at all. I think it's easier in some ways when the decision is taken out of your hands...

Marcus is right when he says that it's you and only you that can make the decision. You often feel that you're the only one who is going through it & that everyone else is living in another dimension - it can be overwhelming.

You need to get your pain sorted out prior to your amputation, otherwise I think the phantom limb pains can be a bit of a problem. You could try one of the commonly used medications such as gabapentin or you could try an epidural - your father should be able to put you in touch with a good pain specialist.

As for surgeons, it's just a case of searching for one. There's a website called www.specialistinfo that may be of help. I haven't had the ERTL procedure, but I've heard varying reports, most of them good.

Has anyone suggested an ankle arthodesis to you as an alternative to amputation? I'm not sure of the extent of your injuries, but it may be an option.

Take care

Lizzie

PS Take no notice of the surgeons term 'limb salvage'; I've been living with salvaged limbs since I was a year old & I much prefer the polite term, 'limb reconstruction'! ;)

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Hi Lizzie;

Thank you for your post.

Yes, I'm finding the decision to have surgery has been much more uncomfortable than surgery itself! I have long wished that the decision had been made for me, but, as my brother has said, "that which does not break me makes me stronger"... or at least more bloody-minded! :blink: :D

As regards surgeons' terminology, the first thing a surgeon told me the day after my accident was that I'd never walk again! :o Of course, I wasn't having that - as a concept, or as advice - so from then on I've considered medical opinion to be negotiable! :P

I have decided to have the amp, so it's just a matter of organising it all now...

My father is no longer with us, bless him, but I will carefully choose a pain specialist. Out of interest, is it everyone's experience that some kind of extended pre-op treatment is essential to minimise phantom pain? Has anyone not had such treatment but been relatively untroubled by phantom pain? Has anyone had such treatment yet still ended up with serious phantom pain?

As regards arthrodesis, I have seen orthopaedic consultants every few years to see what can be done, and they've all said either arthrodesis or amputation. I was hoping that ankle reconstruction techniques would develop sufficiently to help me, but the "state of the art" still couldn't address my fibula-talar arthritis. Other joints - subtalar, foot - are also going arthritic and are already painful, and arthrodesis would only transfer stresses to them, so instead of contemplating more future revisions I might as well get an all-encompassing solution - a good stump and prostheses.

Despite the weirdness of plotting the demise of my own (barely adequate) foot, I'm looking forward so much to being pain-free and able again. :)

Roz.

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Hi Roz

From what you said, the only type of arthodesis open to you would be a triple arthrodesis. However, I'm glad that you have finally decided on amputation - that is the biggest hurdle, I think. I don't think it's strange discussing of planning your foot demise, as I did exactly that & I had to make a choice recently between further amputation or 'reconstruction' (I chose reconstruction)...I'm sure that won't be the last time either.

It's an awful situation and luckily most amps aren't 'stuck between (such) a rock and a hard place'.

Lizzie :)

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Hi Roz and welcome.

I'm RBK and have been for 2 years now. Mine was from a total crush injury to the foot and ankle, and I had a few reconstructions before amputation. I don't envy your decision, it is a tough one to cope with, but you have to do what's best for YOU.

I did have a spinal block put in before the amputation, and had almost no pain afterward, but I have always had the sensation of the foot, at first not in a bad way, just the feeling that it was there! I now walk normally, no limp etc.

I also drive a car, it's an automatic, with no adaptions, but if yours is a manual, there are lots of adaptions that can be done.

I wish you well, and there are lots of people here who can offer advice, support, info and a few laughs as well!

Take care,

Sue. :blink:

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Hi again;

Sue - my car is also automatic - but as an RBK, HOW do you drive an unmodified car? Do you use your left foot for both pedals, or do you make any use of your prosthesis? If it's the former, how do you cope on long journeys? I can't quite visualise myself with my left foot all the way over on the right, to reach the accelerator - not without needing a chiropractor too! I can see that there's great potential for laughs - I've been reading some funny stories on the forum! :D

Marcus - do you know how much longer Ertls take to heal? I usually heal quite well, so what's an optimistic time between amp and first prosthesis?

Lizzie - thanks for the advice on arthrodesis, but my foot is not in good shape - the fascias are contracting, and it's getting smaller and tighter and more arthritic every year! :blink: Since arthrodesis would leave me with the not-so-good foot, and I want to be MUCH more active, amputation seems to be the way to go. I hope you can manage without further interventions.

Thanks again.

Roz.

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Hi Roz:

Welcome, there are a lot of great people on this forum. so a biggggg welcome.

I'm an left above knee amputation. I didn't have to make the BIG decision to amputate, my Mum did. But I had to have a revision Sept 8/05, and that was a really difficult decision to make.

I have lived in Scotland and England, but the best care I've ever had is here in Calgary, Alberta, Canada.

Your more than welcome to stay with us if you would ever consider your surgery and aftercare here in Canada.

I have a grreat prosthetist.

But for the moment Roz. Welcome, ask all and any questions here and I'm sure you'll get the answers from somebody here.

Lynne

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Hi Roz and welcome,

My name is Afet and I am a bilateral below knee since July 2003. This was due to an infection (endocarditis) then septicaemia.

Good to hear that you have come to a decision about your future. That's it... the hardest part's over now. ;)

Now, you asked about pre-op pain medication. I had pre-op pain meds, but not with the intention of minimising any possible future phantom pains. I was in severe pain and in and out of consciousness, so was pretty doped out, but would soon start making a noise when I felt any pain - which was very often.

I now realise though that I was right to make a big deal about the amount of pain I was in. If I had not have received such painkillers (IV), I am sure that I'd get phantom pains now. I am very lucky to say that I don't get any (just the occasional jolt), but continued taking Neurontin/Gabapentin up until a year after I left hospital. I was scared that I'd start feeling phantom pains if I did, but I had nothing to worry about. I weaned myself off over a couple of weeks, and haven't looked back since.

I really think that there is something to the theory that having pain meds in the days leading up to and after surgery will prevent phantom pains. At the very least, you have nothing to lose if you try it.

Please keep us posted on how things go. Best wishes. :)

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Hi Roz and welcome,

I too was in a position where I chose to have an amputation rather than struggle on in pain. After 25 years and 26 operations I had had enough. It seems that doctors have an urge to always save what we have and preserve it, and we tend to trust their every word!

I still found the decision very difficult, but now that it is done, I have no regrets. I am in far less pain, I have had a few problems since my amputation but we are getting on top of them, and I have a new hope for the future.

As far as grieving for your leg, I found that I didn't do that at all. I then realised that I must have I grieved for my loss over the past 25 years. Having been left very disabled and in great pain and unable to do the things I used to.

You sound as if you have reasoned it all out in your own mind and are doing the right thing in researching every aspect of having an amputation.

Gook luck to you.

Lynne (LAK)

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Hi Roz,

Im a newbie also . My husband and your situations sound almost identical he has his amputation on 06/01/06 he will become a lbk but far more healthier, mobile and happier.

I wish you well on your journey and hope to speak with you again.

Have a very Merry christmas.

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Lizzie - thanks for the advice on arthrodesis, but my foot is not in good shape - the fascias are contracting, and it's getting smaller and tighter and more arthritic every year! blink.gif Since arthrodesis would leave me with the not-so-good foot, and I want to be MUCH more active, amputation seems to be the way to go.

I just mentioned arthrodesis as my father had a triple arthrodesis in the 1970's (he nearly lost both his legs in a motorcycle accident 20 yrs earlier) and he's still doing fine with two feet. But, everyone is different - what suits one person doesn't necessarily suit another.

Lizzie :)

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Hi Roz! I'm a rbk since August of 2003. I also made a choice, lots of reconstruction after a car accident and everything got too painful. Good luck with everything and it's great that you have joined our group and our researching options before you take this step. I didn't find this group until after my amputation.

As far as driving, I drive an automatic with no adaptions. I drive with my right leg prosthesis and everything is fine. It just takes a little practice when you first start to drive. I even am able now to drive on the nasty icy roads here in North Dakota during the winter. Don't even slide around much any more.

Good luck with everything and keep on asking questions!

Carol

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Hi Roz,\Unique here again,

Thank you for the lovely thoughts and I ma glad that I could ehlp you see things in a different way.

After reading my post I wanted to add a few things if you don't mind especially in the preopertive pain prevention area

My ex -husband is a certified prosthetist(an excellent one) and he was the one who began telling me about the strides they have made in preventing pain with preoperative epidurals, these days.

In many ways you are in a very unique(Pardon the pun)and eviable position to save yourself and your family the hardships of dealing with acute and the possibility of chronic real pain or the psossibilities of phantom pain or sensations.

(I have been an amp for along time and it does get much better, the first year is the worst)

Another amp mentioned that she was on IV painkillers prior to her amputation due to her other injuries, that method works well too, but that is not what I am advocating to you.

There is a difference between the standard IV pain meds and the placement the Indwelling epidural (In your spinal chord) for at least three days prior to amputation.

As I said in my prior post, please contact a pain management specialist WHO HAS DEALTH WITH AMPUTATIONS BEFORE and don't take OH well I have heard of it before as an answer. Do this NOW for your future , you have been through so much _____ you decerve to have the best shot at a real mobile recovery.

Swim on ,

Unique

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Hi all;

Thank you so much for your many informative, supportive and helpful posts!

Lizzie2 - it's good to hear that your father's triple arthrodesis has served him so well - has he ended up with more arthritis developing elsewhere, such as his feet? Do you think he's more or less able than an amputee? Thanks for making sure I know all about this - I won't rule anything out until I've seen a consultant, and obviously the more I know, the better.

Lynne - It's so reassuring to see that you have successfully faced down the hard choices I now have - thank you also for your perspective on the grieving thing - I can see how that could apply to me, too...

dumbarton (Lynne) - I grew up in England, but vacationed every year in Scotland where my parents' families were from, and they very nearly moved to Canada before I was born! Aah - what could have been! A million thanks for your overwhelmingly generous offer - I'm just speechless! God bless you! Due to work commitments I'll really need to try to make things happen here in the UK, but ultimately there's no point in compromising something as important as this, so I'll keep in touch!

Marcus - thank you again for more valuable info - I'll go out into the countryside and try the crossed-leg driving thing!

caroln (Carol) - I was hoping that it was possible to use a prosthesis when driving, as I've managed to adapt to using my bad leg, which has foot-drop - it's getting too painful now, though. Do you have a particular kind of foot that makes driving easier? I'm eager to learn all about the hardware!

Unique - you're right again about making the best of a bad situation - this time, having the best-planned amputation possible, making the best of my bad leg! Thanks again for even more specific pain management recommendations - information of this quality is giving me an exquisite feeling of confidence and control, knowing exactly what to ask for! I'll make sure I get it, too..!

I'm now feeling very, very much better about my amputation, and have therefore been able to have the best, most relaxed Christmas I've had in many years - my heart goes out to you all, thank you so much! :rolleyes: :D

Best wishes

Roz.

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Good Morning Roz

I was reading with interest your comments about driving. When I was first amputated, (rbka), I had the same concerns. Before before I even had my cast off, I was driving with my left foot crossed over. (American, with the wheel on the left.)

With my prosthesis, I have absolutely no problem at all. Instead of having the fulcrum on the ankle, it is now on my knee. I use my whole leg to measure the pressure on the gas pedal.

When driving an automatic, I have gotten in the habit of using my left foot on the brake. (Lazy), however, I can drive a stick shift just as well and use my prosthetic foot on the brake.

I grew up driving trucks and still can with no probem at all. Farm tractors also.

I tell people to take a pencil in their hands, and with their eyes closed, reach out and touch something with the pencil. Your mind immediately not only knows when it has come in contact with something, but can even describe it.

The same thing with the prosthesis. I can "feel" the pedals all the way through the prosthesis into my stump.

I have travelled all around the western U.S. pulling a camping trailer, (and my utility trailer when moving out of state.) and never think anything about it. It is just as normal as before.

As I mentioned earlier, I drive not only cars, but trucks, tractors, lawn tractors, or whatever I did before. Even our small camping motor bikes or trail 90's.

Having my knee is the key. I don't know how this would work if I were an AK since I am not faced with that, but as a BK, it works just fine for me.

I just thought that I would add one more perspective for you to think about. We all have our own ways of "adjusting". Trust me, you will find yours and it will become second nature.

By the way, When I first lost my leg, my sister sent a friend of hers to see me, who's leg had been amputated after 5 years of dealing with a damaged foot. He was so relieved to have gotten rid of the constant pain and problems with the foot.

(He was and is still an over the road, 18 wheel truck driver). I was still in the hospital when he came to see me, and through tears in my eyes, I asked him to tell me the worst thing about being an amputee. I told him that I was tough and I could take it, and not to spare me. He thought about it for a second or two and then slowly said ...... "You know Jim, I have to say that the worst thing is ........ Every time I go swimming, I swim in circles". Of course, we all broke out laughing. That has been my attitude ever since.

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Welcome Roz,

This is a very dificult decision that unhappily or maybe let's say happily you are the one who can make it. Most of us didn't have the choice in this matter. There is a site called, "Stump R us" where someone claims he had so much pain before that now he is better off without his lower leg. So maybe that is what you have to do. The main thing is, it is better to have a life without pain than a warm, flesh leg that causes nothing but grieves.

Dea

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