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Heather Mills - Amputee Forum
Peggy

To amputate, or not to amputate?

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Hi,

Ive not been on here for a while - im 22 years old, female, fire control operator (or firefighter (control) to give it the official title) from the uk. I was born with my right foot missing and wear a below knee prosthesis.

My Prosthesis's have always been ugly due to the fact i have still got a bit of a heal from what would have been my foot so i have a great big lump at the back (just about the right height to rest over the back of my shoes)

Ive also got some kind of mini ankle joint but the leg below my knee is very skinny (skinnier than my lower arm to give you an idea)

ANYWAY... the reason im writing is i today went for a routine appointment and my dr said i should seriously consider having my weird foot-ankle thing amputated for the following reasons:

1) get a nice leg

2) stop the pain where my prosthesis rubs the bottom of my weird foot/ankle thing

3) get better mobility (would be able to have a mechanical ankle joint?)

4) the chances are i will need an amputation at some point in the future so its better to do it sooner rather than later to get the full benefit

He said that if i was his daughter, or if it was himself he would opt for surgery.

I would be lying if i said i'd never thought about it but i have always thought its probably better to let sleeping dogs lie and be happy with what i've got, its not like cutting your hair when you can grow it again or stick it back on if you dont like it!!!!

At the moment im a very active (cycling from oxford to brighton and back within 48 hours on friday with some work colleagues (firefighters) to raise money for a local charity- im the only girl.... :-) ) so obviously im slightly sceptical about having better mobility as im pretty good at the moment (although i cant walk very far becuse the rubbing starts to hurt alot)

I just wondered if theres anyone here whos been through a similar things and could give me some advice?

Lauren xxx

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Hi Lauren

I was born with various thing wrong with both my legs & my pelvis. I had an AK when I was just a baby and for my first 14 years I walked about on an AK prosthesis & a KAFO. I had a Symes amp (I chose to have the amp because the prosthetists I had at the time weren't skilled enough to give me a comfortable fitting KAFO) when I was 14 & so I now have an AK & a BK. When I was 14 yrs, I was told that my remaining knee wouldn't last until I was 30. I'm now in my mid 40's & although I've had a knee replacement (2 yrs ago), I still have a knee. Over the years several surgeons have offered to take various bits of my legs away & they've always been very surprised when I've said 'No'.

Knowing what I know now, I would leave sleeping dogs to lie. Don't let anyone persuade you to have an operation you don't really need, or want. If you're mobile (& you sound very mobile to me) then leave things as they are...you can always have that sort of surgery when you're older. They should be skilled enough to make a prosthesis that works well for you - it's up to them to come up with the goodies & not expect you to have an op, just to make fitting easier for them (which is what one doctor told me a few years ago). If in doubt, go with your gut instinct. If you need to, PM me.

Lizzie :)

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Hi lauren,

I agree with Lizzie,

If its not broken, don't fix it!

You sound very mobile and the main problem for you is the rubbing. They should concentrate on sorting that for you. Go back to your limb centre and see what they can do. Lizzie is right it is up the them to provide you with a comfortable priosthesis. Maybe your shoes need to be altered to accomode your problem.

You can always opt for amputation sometime in the future if and when you really need it

good luck in all that you decide.

Lynne

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Hi Lauren,

I can’t offer advice however, I can relate to your dilemma. I was blown up as a youngster, my legs came off worse and had to fight to keep them. The biggest problem I had was new shoes; they would rub holes in my feet and ankles within hours. This meant I could not walk or wear anything on my feet for a while. The holes turned into ulcers and I used to end up in hospital to get them fixed.

I used to get my brother to break the shoes in for me, not very convenient for me, as he would keep them if he liked them.

Not a lot could be done medically to resolve this problem so, I started to experiment with different styles, makes and sizes, boots turned out to be my best option.

At no point did I think I had made the wrong decision to keep my legs and although I had various other problems challenges to overcome, I managed to do everything I wanted to do with my life. Therefore, when the time came for me to have my legs resized it didn’t bother me that I hadn’t achieved everything because I had.

Now I want to see if I can do it all over again but better.

I do agree with the others, if you’re happy why fix it.

I know that everyone is different and a lot decisions people make depend on their attitude to whatever it is they are faced with.

Someone once told me, “Losers whinge about it, winners work it out.” You sound like a winner to me.

All the best

Sparky

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Guest bearlover

I do know that I had no choice it was my leg or my life. So it was a no brainer! However, I had a birth defect and had many major operations since infancy. Long story short it caused a Major bone infection 3 years ago and I had to loose my leg. If I had did have a choice I would choose to keep it. After experiencing the loss of a leg it has not been easy at all on me. I have had major problems with it. As far as pain, fittings, shrinking, and everything else that goes along with it. I would take that mesed up leg back in a heart beat. It would be better than this. Iam a lbk. My "bad" leg was 4 size differences in shoes, surgical scares, defourmed and I wore a brace all my life since 8 months old. That to me was not as bad as what Iam going through now with a amputation. For me I feel it has made me worse. But iam here and living.Some amputeees encounter no problems and are happy with their choice and some like me are having a hard time with it. NOT emotionally at all, for me I knew some day I would loose it. But physically I feel iam worse off. I only keep on trying and pushing and try to make it better...That is my honest experience with amputation. But I can't give you a direct opnion just my personal experience...Best wishes!and good luck. ;)

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Guest bearlover

One more thing, I was also told about having no pain and stoping the pain... at amputaton ,Bull I still have pain and phantom pain. The Dr. mislead me. My prosthetist said that no Dr. should have told me I would have no pain.. I would seariously speek to a cetified Prosthetist FIRST before you make a decision he or she can anwser most of your concerns. Something I did not do. As it was a emergency. But you may or may not continue to have pain after if you decide to amputate. ;)

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Hi Lauren;

I can empathise with your problems, because while mine weren't as a result of a birth defect, they still gave rise to pain, lack of function, and a disfigured leg. After struggling on for 27 years with this leg, I recently had an elective amputation, and things now look very promising.

However, in your case, I tend to agree with the opinions previously expressed - I'm dubious as to whether amputation would give you an improvement in your quality of life.

As my arthritis progressed I could barely press the accelerator pedal in my car, let alone walk, and I could only stand cycling for very short times, and would always pay for it later with severe pain. Even without pain I couldn't have run, as I had foot-drop, and my foot had become quite deformed by contracting fascias and adhesions. I reasoned that amputation would free me from my arthritic pain - which it has - and that a good prosthesis would function far better than my messed up foot and ankle; as my amputation was only a month ago, I haven't received a prosthesis of any kind yet, but all the signs and opinions look good for my amputation outcome. As regards the appearance of my stump, I'm far happier with it than with my awful old leg!

In your case, I'm not so sure amputation would help you - at least, not yet. You have lack of function due to your absent foot, but you can weight-bear, and you can cycle - considerable distances, it seems! You only seem to suffer pain as a result of a poorly-fitting prosthesis, but that problem plagues all amputees until they get them resolved by their prosthetists. I presume that your current prosthetic foot will have some degree of energy return, and that a wider choice of components may make some positive difference, but perhaps not a significant a difference. However, it can't be argued that a BK prosthesis would probably be nore natural-looking than what you describe, and I've often heard the opinion that sooner is better than later in terms of acclimatising to any kind of amputation, but you have many years ahead of you in which that option will still be available - I had my original accident when I was 20 and made very good use of my compromised leg, waiting until my 40's before taking the amputation option.

To me, your problems don't sound sufficiently severe to justify a BK amputation, and you may end up with more pain afterwards; if your lower leg is currently very thin, you may end up with a bony stump, which can be difficult to fit a prosthesis to comfortably, and I think you should get several prosthetist's opinions on this. Furthermore, do you know or have you met any BK amputees in person? Are you aware of how their routine and experiences differ to your own current ones?

Ultimately, if I were you, I wouldn't have an amputation - yet. I kept my bad leg for 27 years, and only got rid of it when it became an unbearable liability, and you don't sound like you're at that point - yet. I think it's very healthy of you to entertain the option, and find out as much as possible about it so you know exactly what you're dealing with, and I wish you the best of luck in finding all the information you need to make your decision fully informed as to what, how, and when.

Very best wishes

Roz. :)

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Peggy:

What a dilemma - to chop or not to chop!

On the one hand, your doctor has several valid points in favor of amputation.

1. As a young woman, you could have a more "normal" looking foot and leg that would match you other "good" leg.

2. As an active person, you could have a high-end multi-axial foot that would give you some passive ankle movement.

3. With a good-fitting prosthesis, you should be able walk, run, cycle, and do other activities. From what you say, I'd guess you would have more stamina and mobility WITH the amputation and a good prosthesis.

Those would be arguements FOR amputation.

Some others say "If it ain't broke, don't fix it." I like that saying when it's true. But from what you say, it IS broke. Your foot-ankle-leg doesn't look and work the way it should, right? Of course, we can't see you in person, so it's hard to evaluate on-line.

Of course, going into any kind of surgery is risky and unpleasant. And there will be a period of time when you're off your feet. You need to weigh whether the anticipated results are worth it.

Another factor to consider: You are a fire-fighter. How will this surgery affect your ability to continue your profession? Since you're already an amputee of sorts, I suspect you're already past that hurdle of acceptance. From what you say, you should be BETTER able to do your work after getting a good-fitting prosthesis.

All-in-all, I would lean toward doing the surgery -- but only you can decide. It's a big step, so decide carefully.

Do get second opinions and check with prosthesists before surgery -- also physical therapist.

Check to see how all of this will affect your employment.

Do meet and talk with other BK amputees who are young and active like yourself.

Do a Google search for the Amputee Firefighters Association. Two whom I know are Dave Dunville (Michigan) and William Malmskog (California), Don't know if they have any UK members. (If not, you could be the first.)

Wishing you all the best.

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Hi, I had to choose whether or not to have an abnormal foot and ankle amputated many years ago and made the decision to go ahead. For me it was the right choice and I am glad that I made it but I realise that everybody's circumstances are different so only they can decide what is right for them. I have good mobility now and I know that it is far better than I would have had if I had kept the very deformed foot and ankle that I had as they were causing me serious problems.

It is not an easy decision - good luck whatever you decide to do.

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Guest bearlover

For me there is nothing like the real thing. No matter what it is or what it is like, Been their done that! But that is only my true feelings. ;)

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Thank you all for your replies!

I have decided that at the moment, I am coping just fine and an amputation would be the wrong decision for me,

I wish you all lots of luck and happiness

Lauren x

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Thank you all for your replies!

I have decided that at the moment, I am coping just fine and an amputation would be the wrong decision for me,

I wish you all lots of luck and happiness

Lauren x

This - AS I SEE IT - is exactly the reason that we all are here: TO SHARE OUR EXPERIENCE, STRENGTH AND HOPE, so that another can make their own decisions. Or to at least be of help in making that decision. I try never to give advice. I don't live in your situation 24 minutes, let alone 24 hours a day. I haven't the slightest idea what you should do. Only you and you alone can make that decision -WITH HELLP FOR PEOPLE THAT YOU LISTEN TO.

Good for you. It sounds like you did you homework and made your decision. The good thing is that you can always go back and revisit it.

Good Luck - and God Bless.

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Guest bearlover

Iam sure you made the right decision for yourself right now..Best wishes and good health,! :)

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