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Taralou

I'm afraid I'll regret elective amputation

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Hi there, I'm new to this site. I had a partial foot amputation just over a year ago following an illness and am struggling to cope. I'm still on crutches with no sign as of yet of ever coming off them and now my physio and two consultants have recommended a below knee amputation. I asked the surgeon why he didn't give me this option at the time of the initial surgery and he said his priority was to preserve as much tissue as possible as the prognosis for a good recovery i.e. that I might walk with a prosthesis was excellent. The team at the rehab hospital are trying for the fourth time to come up with a prosthesis to help me but as they don't see many partial foot amputations this is new territory for them and we're not having much success...

I'm in hell right now as I don't know what to do. I feel like a kid and I wish someone who knew everything about everything could just step in and make a decision for me - the right decision.

I can drive and get around on crutches but I'm so slow and so tired of people asking me ten times a day what happened to me. As it stands right now I can get around my house using a big clunky prosthesis but I get tired so easily and am in pain on an almost daily basis. I can wear shoes and boots and when I'm sitting down you'd never know I was missing my foot.

If I had the amputation I know I could walk again without crutches and could wear a great many of the shoes I've held on to that I can't wear at the moment but I dread facing more surgery and rehab and most importantly being a burden to my family all over again and having to give up my independence again just at the stage where I've moved back to my own house and can drive my car again.

I also can't help obsessing about how this will affect how I'm perceived by guys. I was very outgoing before this happened but now I worry about the future. I enjoyed my social life and I always assumed I'd eventually meet someone and live happily ever after but one thought just won't go away - who's going to want me now?

I know the question has probably been asked many times on this site about elective amputations but how do you know or when do you know it's the right thing to do? I'm so afraid I'll regret it, but on the other hand I see people in rehab with prosthetic legs and they're flying around the place and you'd never know 'cause they don't even have a limp. I'd love to hear from people about life after elective amputations - the pros and the cons. Does anyone feel they regret their decision?

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Hi Taralou,

Welcome to the forum, you'll find lots of support and advice and you in turn will help others too.

I had an elective above knee amputation and it really is a difficult decision for anyone to make.

I was living with constant pain and imobility for years, had lots and lots of operations to try to improve things.

I spoke to lots of amputees, visited my limb centre and was shown an above knee prosthesis prior to my decision. I also had three seperate opinions from different consultants....all recommended amputation.

Ultimately in my heart of hearts I knew it was the right thing to do. It still was't easy though.

I have since had six revisions...my journey is not the norm and I am still in search of a prosthestis that fits.....but do I regret my decision.....No.....once it's done it's done! No going back.

The decision must be yours and yours alone....research things as much as possible and never feel presured by anyone to do what you are not sure of.

I wonder if your pain is due to an ill fitting prosthesis or if it is present when you don't wear your prosthesis?

You say they have no experience of fitting partial foot amps....then ask to be referred to somewhere that does. I put up with not being fit properly for years before asking to go elsewhere. They never want to admit defeat and will keep on going around and around. Your prosthesis is pretty specialist and you need a prosthetist that has a lot of experience making them, you don't want to be a guinea pig for a prosthtist to learn on!

You say that your prosthesis is big and clunky...will you ever come to terms with how it looks....will a better fitting one look any different or will a BK prosthesis look better cosmetically. Just some thoughts. Is how your prosthesis look effecting your confidence and self worth?

Losing your independency will only be a temporary thing, or you can remain independant whilst recovering, you can still have support and remain independant.

As far as relationships go, there are plenty of amps of all varieties on this site who will tell you that it's not easy sometimes but then they are not easy for 'able bodied' either. If a guy is put off by your amputation then is he really the guy you want anyway?

Sorry to go on, just trying to respond to your questions.

Sure others will be along to add their two penneth worth.

Good luck with everything, keep us posted as to your progress.

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Hi Taralou, welcome.

I didn't have an elective amputation, I was in hospital for 10 months before the decision was made for me due to infection and non heeling. I only wish now that I'd been braver and gone for the amputation earlier.

Being an amputee in my experience hasn't been anywhere near as frightening as I thought it was going to be.

I'm an AK and I get around OK... in fact being an amputee has opened up avenues that previously weren't there, or weren't likely to be avenues I'd persue otherwise.

Everyone is different and there's a certain amount luck involved in whether you get a well fitting prosthesis and maintain the ability to be active, but on the whole I'd say the amputees I've met are happy with their lot, and the vast majority don't even dream of using crutches.

If I were forced to make the decision for you I'd say go for it... sooner rather than later.

Good Luck either way!

P.S. As for relationships, I was lucky I guess, I found a nurse... they understand more than most perhaps, but the truth is, the right person will love you for the right reasons regardless of the leg, that will become ever more insignificant as the years go by. It will become a part of who you are, and in many cases, can make you an even better person that you were before. It worked like that for me, in many ways I'm grateful for what my accident gave me in the end.

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Hi, Taralou, and welcome!

I'm a "semi-elective" below-knee amputee...I had a broken foot which was reluctant to heal, had several surgeries to attempt to repair it, lost part of my foot after one particularly unsuccessful attempt, eventually developed infections which threatened my life, and was presented with a choice: to make one more attempt to repair the foot, or to amputate. At that point, I'd been living with the broken foot for just over a year and I was tired of being in the hospital and in constant pain, barely able to walk. I chose to go with the amputation option, and I lost my left leg mid-calf just about five years ago.

It wasn't an easy decision, but it was the right one. I've been able to get my life back to an astonishing degree, was able to return to work and take up favorite activities again. I live on my own, and was able to do so while recovering from the amputation as well. (With a little help from some amazing friends, that is!)

For me, it was the sheer exhaustion from being in pain and fighting off the infections that convinced me that amputation was my best possibility. I've gone through the usual "new amp" trials of getting a good-fitting prosthesis...each of my "new legs" has been an improvement, as I've become more adept at walking with a prosthetic leg and my leg guys have been able to improve my fit and design. My prosthesis is usually comfortable and pain-free to wear...definitely better than my "real" leg was by the end!

I think that, when you reach the point that amputation seems like a good option, most people know it. I know that I did. Until you get to that point, I'd explore all your options and try all possible remedies. Amputation is not a horrible thing...you can live a full and happy life with fewer than the usual number of limbs. But it IS a permanent thing, so just make certain that you've accepted that before you decide to go ahead.

As far as "social life" goes, well, I'm determinedly single, so I'm not the best example for you...but we have many members here who have close relationships and loving partners. Your attitude and personality count for far, far more than your "limb inventory!"

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Thanks to everyone who's replied so far. I'm sure you've all been through what I'm going through right now. I don't like to bother my friends or family with my concerns, partly 'cause I've already put them through so much with my illness but also 'cause they wouldn't understand how I'm feeling so it's really helpful for me to have found this forum because you all know what you're talking about and I don't feel so alone now :smile:

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You have been given some good advice. I am a right below knee amp due to illness. Had no choice in the matter so can't imagine having to actually make the choice. I can only tell you that I live a normal life, relatively pain free. There are some bad days but mostly good days and a lot of GREAT days. Best of luck to you.

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Hi Taralou

Welcome to the forum.

Not surprised you are feeling a bit overwhelmed at the moment, must be an enormous decision to make. I had mine done due to an accident and the decision was made by others, however just over a year ago, I elected to have a revision amputation and but it was still a huge decision to make and took me quite a while. So when you say "I feel like a kid and I wish someone who knew everything about everything could just step in and make a decision for me - the right decision", I know how you feel because I felt a bit the same way and didn't want to make the wrong decision and end up worse than I already was. Trouble is, as with any surgery, no one can give you any definite guarantees, it does have to be 'your' decision, and you can only base that on information gathered, advice from the medics and really just gut instinct that the people looking after you know what they are doing, and its right for you.

First off, remember its elective, so you've got a bit of time to do some research, talk to people, etc. etc. You say you are at a rehab hospital and they are trying for a fourth time to come up with a prosthesis ... I know thats really depressing, especially if you are watching others being fitted and doing ok, so its natural that your spirits are low, but if you read thro a lot of the postings on this forum you will see that whatever level of ampution ... its sometimes a struggle to get a well fitting prosthesis with the first prosthetist you are assigned to, or the first centre you go to. Sometimes, you have to find somewhere or someone, who is better skilled in making the type of prosthesis you need. If you have a rehab consultant, talk to them about why its not working for you at the moment ... if they haven't already done it, ask for x rays/ultra sound and ask to see them and discuss what might be causing the problem. You mention, they don't see many partial foot amputations, so maybe you need to ask if you can be referred perhaps to someone who specializes with them, or a larger centre where they treat this level of amp more. I have met a couple of people, whilst sitting in fitting rooms, who have had this type of amputation, and they were actually wearing a very neat looking silicon prosthesis ... there could be good reasons why they haven't fitted you with this kind ... however, I do know that it is quite specialized ... so before you rush into surgery, it may be worth checking out if you could be referred to someone or somewhere else.

As well as this, I'd take Lynnes advice, visit a few specialist prosthetic rehab consultants, have a look at the different kinds of below knee prosthesis that might be available to you should you go down that route. Talk to below knee amputees, ask them how it is, how the surgery was, and how they manage. Talk also to them about who their surgeons were etc., if you get as far as thinking about surgery, get several referrals to different surgeons, make sure you ask questions, write a list and take them with you in case your mind goes blank (I am sure folks on this forum will tell you the questions you should be asking). Think of it as if you were interviewing someone ... take charge ... I found that once I started taking charge of the situation myself I felt much better about it.

People always ask questions, so don't worry ... its up to you what you say, myself if I am asked it usually depends what mood I am in. Don't worry about everything at once, especially how you are perceived by guys. If I tell you that I lost both my legs below the knee when I was twelve years old, all my dating experiences have been as an amputee ... but ... I am married and have three, now grown up, children, obviously live with my husband but have always been completely independent ... work, drive, do my own housework/ shopping, etc. etc. ..... hopefully, you are getting the picture here that its not the end of everything, life can still be good.

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Welcome Taralou Im new too!

So sorry to hear of your dilemma, I had similar probs with having my fingers removed, I wanted someone to say this has to be done, but they never did. On making the decision re my legs, that was taken out of my hands ultimately as there was no other choice. But I had been in a lot of pain and that pain has now gone and I cant tell you what a relief that is. I have never heard of a partial foot amp, I was told once the infection started up the foot the whole foot must go. I know drs like to save as much limb or digit as possible for future use, but in my opinion taking it back to a good part makes for a better repair and healing.

I hope this makes sense and helps a little towards your difficult decision. Then you can get on with living again and you will :smile:

Soo

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Hello Taralou:

I've only got a couple of things to say.

First of all, I have only experienced one person trying to deal with this partial foot thing and he had the hardest ime getting anything to work for him and he spent an awful long time at physio during his process. However, in the end , he did manage to get something fitted so that he could return to his job in the mines but it took A LOT to get that fit.

Secondly...............yep, listen and watch to those BKs around you at the hospital etc............BUT...........go out of your way to find a functioning BK person who is what I call "seasoned amp".

By this I mean a person who has been a BK amp for quite a while and who is living their life to the fullest. Then you will see the real, full potential and results of choosing to lose a leg below knee. You will be suprised and then challenged to attain the same potential if this is the route you choose.

ED

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Hi Taralou,

I feel so much for the situation you are in. I am an elective, left hip-disarticulation amputee. My decision came from a lifetime of having dealt with a very, diseased problematic leg. It had just come to the point where very serious infections were beginning to threaten my life. I was born with lymphangiomatosis. For years my doctors had told me to have it amputated, but I just couldn’t do it. I just wasn’t ready. That is really the key, to waiting until you are ready, and you will know. You will just know from a place deep inside yourself that it is the right time, and the right thing to do.

Even after I had made the decision to have my leg amputated, I didn’t rush to have the surgery. I took an entire year, to soul search, talk with friends, family, and other amputees. I turned to prayer and meditation. I talked extensively to many different doctors and prosthetists. I took the time I needed to prepare myself for what I was about to do. I look back now and I am amazed at how emotionally at peace I was when the day of my surgery finally came. I had no doubts. I am glad that I gave myself that year to prepare and put myself in the right place.

The one year anniversary of my amputation is coming up in a few weeks. Of course I have had moments when I have felt doubts I did the right thing. But they come and go. I have a prosthetic now and I finally have the chance to walk for the first time without crutches in 15 years. As a single woman, I went through the same thoughts in my head before my surgery; “What guy is going to want me now?” But my amputation has been a huge lesson in self-love and acceptance, that I am beautiful and deserving of love, even without my leg. I know eventually there will be someone special who will love me just as I am.

Just give yourself the proper space you need to be sure this is what you want to do. Don’t feel you need to rush into making a decision. Talk to as many people as you need to, give yourself the time to gather all the information you feel you need. But in the end, the right decision can’t come from others, it is something that only you know, and your spirit will tell you what is truly the right decision. Feel free to ask us all as many questions as you need.

Much luck to you. I will be thinking of you and keep us posted how you are doing.

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Well, I have been right there in your shoes so to say. I am not going to get into a big story about me.

But, I do want to tell you that if I would have had the amputation a long time ago, things would have been a lot better for me.

That is my regret. I should have done it soon. Now I live in constant pain. If I would have just done it then I would be alright.

I work as a prosthetic tech. I start my first paid day on Monday! I have been volunteering there for just over 3 months.

I have seen plenty of partial amputations. I have made shoes for them with big inserts to fill the empty space in the shoe.

I have sen how they walk compared to the amputees. The amputees are doing much better for the most part. This of course

depends on you however. If you have an amputation and are all down about what could have been or why you and you

just don't want to do it then amputation will not be a good thing if however you are the kind of person that is a fighter and says

"nothing can stop me from doing what I want to do" then amputation will not get you down but get you active again.

Yes, there are some days that are hard. I think most of us if not all of us feel down about it at times. We have bad days just like any two

legged person. But, we get up even tho we just don't feel like being an amputee that day and we put that leg on and usually by the middle of the

day we forget all about feeling down.

Ultimately, this decision is yours to make. You can live a fine healthy life with a partial amputation and you can get around.

You can also live fine with an amputation and get around like nothing ever happened. It is a big tough decision to make.

It was the hardest decision I ever had to make. I questioned it all the way up till the Dr. put a mask on me and told me to breath deep.

I know now that it was the right one! The others that have responded to you are all right on! You need to make sure this is for you.

Talk to everyone you can about it. Another thing you may want to do is go see a Prosthitist at your local Prosthetic Clinic. They can answer a lot of questions on quality of life and what they can do for you either way.

I will keep you in my prayers! God bless you and be with you and help you to know what is right for your life.

Corey

TK 9025

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Well, I have been right there in your shoes so to say. I am not going to get into a big story about me.

But, I do want to tell you that if I would have had the amputation a long time ago, things would have been a lot better for me.

That is my regret. I should have done it soon. Now I live in constant pain. If I would have just done it then I would be alright.

I work as a prosthetic tech. I start my first paid day on Monday! I have been volunteering there for just over 3 months.

I have seen plenty of partial amputations. I have made shoes for them with big inserts to fill the empty space in the shoe.

I have sen how they walk compared to the amputees. The amputees are doing much better for the most part. This of course

depends on you however. If you have an amputation and are all down about what could have been or why you and you

just don't want to do it then amputation will not be a good thing if however you are the kind of person that is a fighter and says

"nothing can stop me from doing what I want to do" then amputation will not get you down but get you active again.

Yes, there are some days that are hard. I think most of us if not all of us feel down about it at times. We have bad days just like any two

legged person. But, we get up even tho we just don't feel like being an amputee that day and we put that leg on and usually by the middle of the

day we forget all about feeling down.

Ultimately, this decision is yours to make. You can live a fine healthy life with a partial amputation and you can get around.

You can also live fine with an amputation and get around like nothing ever happened. It is a big tough decision to make.

It was the hardest decision I ever had to make. I questioned it all the way up till the Dr. put a mask on me and told me to breath deep.

I know now that it was the right one! The others that have responded to you are all right on! You need to make sure this is for you.

Talk to everyone you can about it. Another thing you may want to do is go see a Prosthitist at your local Prosthetic Clinic. They can answer a lot of questions on quality of life and what they can do for you either way.

I will keep you in my prayers! God bless you and be with you and help you to know what is right for your life.

Corey

TK 9025

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Amptrooper, reading your post I thought - did I write that? Now it's been 40 years and I still have phantom pain. Not as bad as first few months. Tried everything. Some of my thoughts, take them for what theyŗe worth. Pain doctors- check their credentials, I fell in with a group who were anesthesiologists and spent their free time as pain specs. I ended up taking Vicodin, Xanax, Neorontin and wearing a Fentanyl patch, all at the same time. Went into hospital with unrelated urinary tract infection, went into septic shock, don't remember anything at all what happened the next thirty days! The hospitalists and other specialists and two pints of blood pulled me through.

THey said the toughest part was weaning me of the Fentanyl. After that two weeks in rehab. Now I manage with Neurontin, occasional Vicodin or Tylenol and a lot of self control and excersize - walking. I don't want to lose another 30 days of my life.

Other things I've tried: TENS, biofeedback, hypnosis, self-hypnosis, accupuncture, psychyatrists and psychologists, and all kinds of medicine. Lately I have read that Fentanyl is bad?! I had injections right into the nerves in the spine. One of those was Fentanyl. Instant relief, that reallly felt good, no pain whatsoever, BUT that euphoria lasted only for about 20 minutes. That led to the Fentanyl patch.

Concentrating on some activity is good. I do the SUDOKU in the daily newspaper. Started

writing stories about my life as a kid > as a young man > and on & on. Pressure on the stump, a rolled up towel in bed, a brick on the bench at a picnic... you have to improvise. Sex is good.

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I've just gotten out from hospital - I had an infection in my leg. While I was in there the surgeon came to see me and added his name to the list of people who are telling me that an amputation is the best thing for me now at this stage. It's so hard to hear that. I want to stick my fingers in my ears and scream lalalalalalalala until they leave the room! But something's changed in me this last week. I'm starting to see this not as the end of the world but as the beginning of a new journey - an opportunity to be better. I know what's ahead in terms of surgery, rehab, disruption to my life etc. so in a way I feel better prepared having been through it once already. I've been on crutches for over a year now and unless I do something different nothing in my life will change and 3,4,5 years from now I'll still be on crutches.

I don't want to have the surgery then and look back and think I wasted 5 years hobbling around when I could have had a better quality of life sooner.

I'm 95% decided now - are you ever 100%?

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I don't know if anyone ever reaches 100% certainty...I still have the occasional day when I wish that there had been a procedure that would have allowed me to keep my leg. But, overall, I'm in so much better health and can be so much more active that losing the leg was well worth it. One other thing I've found is that I've learned so much about myself and what's really important to me since losing the leg...I've said it before, but it's the truth: if they told me I could have my leg back, but I'd have to give up all the things I've learned and the friends I've made to get it, I seriously doubt that I'd WANT the leg back.

Taralou, I spent a lot of time dealing with infections in my leg, along with my recurring fracture. It wears on you. A bad infection can kill you. The last one I had almost did exactly that. The very next day following my amputation, I felt so much stronger and healthier...it was an extreme action, but losing my leg made it possible for me to live a full and healthy life.

I'd say that I'm about 99 and 44/100s percent sure that I made the right decision.

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Well it's now 5 months on and I've had the operation. I got out of rehab two weeks ago and I'm back home with my new leg. I'm so glad I did it - everything's so much easier now. I can walk around the house without crutches and I just need a stick when I'm out and about.

Thanks to all for your advice.

Life two here I come!

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Well it's now 5 months on and I've had the operation. I got out of rehab two weeks ago and I'm back home with my new leg. I'm so glad I did it - everything's so much easier now. I can walk around the house without crutches and I just need a stick when I'm out and about.

Thanks to all for your advice.

Life two here I come!

Great news! thanks for letting us know.

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Well, I'm a little late getting here, but I'm glad to hear that things are going well for you!

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