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Heather Mills - Amputee Forum
RozM

Hello! ...choosing to amputate is tough!

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Hi Roz,

I haven't been on the site for over a week or I would have replied to you before now.

Your story is so much like mine it is amazing. I had a motorbike accident in 1972, broke my right tib and fib in 5 places, one which was a compound fracture. Over the next 33 years I had umpteen operations, including bone and skin grafts. I also wore a caliper for about 12 months then decided I didn't need it and walked around without until I had my first son, then when he got to the stage of running me ragged I had to get the bone fixed and had my bonegraft. This stood me in good stead for a few years, I did have shortening and had my shoe raised to compensate, but also had trouble with my ankle, which then developed arthritis. As the years went by, I was in and out of hospital, until about three years ago the osteomyelitis which had developed in my tibia became unbearable and to cut a long story short I decided to have the amputation. It is now a year last October since I had the op and must say it is one of my better decisions. I am not saying it has all been a bed of roses, but to have a leg that is the same length as my other leg and to be able to buy shoes 'off the peg', not to be in pain and its not bad looking either, much better than the original anyway :P

If you have any questions you can email me and I will try to help the best I can.

Good luck and take care.

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Hello Roz! :D

I have not signed on in months but today had some time and decided to check back in with my wonderful friends here. I found your story right off and just had to send out a note of encouragement.

My name is Judy and I had my amputation almost exactly two years ago. You can find my story (and many others) in the posting called "My story", where I encouraged everyone to write out their stories. I am under 'jberna'.

I had a terrible ankle also, from birth, due to spina bifida. I was very 'normal' otherwise, for the most part and just dealt with that bum ankle/foot without telling anyone. I had very little range of motion in that foot/ankle, was very limted on the shoes I could wear (almost NO dress shoes...only tennis shoes that laced up well). As the years went on that foot deteriorated and started to really hurt too. I sympathize about the trips to the grocery store being a big deal. It is a terrible way to live, when you feel "healthy' in every other way.

When I was in my mid 30s I had yet another surgery to try to 'make it better' and it once again did nothing, except put me on crutches for another four months. I have four young children (the youngest a toddler at the time) and was just tired of dealing with that foot and having it hold me back.

I had read so much thru the years about prosthetics and always had the question "why cant we just start over??" but every doc would look at me in horror, saying "we dont cut off a healthy foot"...to them it was 'healthy' because it had a pulse and no infection....they didnt seem to care that it had no range of motion and HURT me.

Finally I had to make the choice for myself. I found a surgeon who understood my delimma, and my choice to have mobility over a flesh and bone leg. I had my surgery in Jan of 2004 and have been thrilled since.

Recently it occured to me that I never grieved for the lost leg because I always hated that leg. I see my new leg as my hero...it has enabled me to live a life I have always wanted...hiking, walkign with my kids, skiing (new for me!), and so much more. Mainly, I am PAIN free most days...a huge plus...and I am doing all I want to in a day, including going to the grocery store and then on to OTHER errands, all with plenty of energy.

My advice...

Tell yourself it will take minimally six months before you are walking after surgery. That will help you stay sane if there are any set backs AND wille encourage you if you are walking on the new leg well (as I was) in a shorter time. Think of it as your year of rehab to get the LIFE of mobility you want long term. My motto was always "this time next year..." I took it slow, knowing this time next year I would be in such a better place.

I also had heard about the pre-op pain management and although I didnt have terrible pain like a lot of people here, I did have a lot if I used my foot a lot. So my doc put me on narcotic pain killers for three days before my surgery. I dont know if it made a difference but I can tell you I have had little to no phantom pain since my surgery. I figured 'it couldnt hurt' to try.

Also, you have to see it that you are looking for 'better than you have now". I wasnt looking for perfect, I was just looking for better than I had before...and this new leg definately fits that description. I didnt go into this looking for a perfect leg that was just like a real leg.....I have never known the feeling of having two good ankles/feet...but I wanted better than I had before and I GOT THAT! This foot has range of motion that my old one never did. It has spring when I walk, which I never had, and it holds up thru the long grueling days I put it thru, having fun with my husband and kids. An added bonus...I can wear sandals and other fun shoes for the first time in my life. I finally have a shoe wardrobe!

I hope this helps some...email me if you have other questions or need other advice. I am one of the few around here (there are a handful of us) who absolutely chose to have our leg amputated and have been nothing but pleased.

I wish you luck on your journey, and keep us posted. I will try to be better about checking in!

Judy

LBK

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Hello Roz!

Welcome to our forum family. I am a bilateral bka. I had no choice in my amputations. I am sure you will find the anwers you are looking for. Just keep asking until you find one that you can live with. I hope everything goes well for you. Please keep us updated on how you are doing...

Patti

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Hi all;

Thank you again for your support - I need it today!

I've done a little extra tidying of my house, and as a result I've now got that oh-so familiar feeling that my entire right foot is in the heart of a blazing fire! :blink: It's so bad I can easily visualise it :o

You are all quite right - putting up with this is NUTS! If I do nothing at all, I can walk from room to room with only a twinge or two, but enlightened militancy has set in - I'm not being held a housebound hostage to pain ANY LONGER! :blink: After so many years of coping with the pain and being afraid of even looking alternatives, I'm surprised at myself for having come round to this way of thinking, but it's your inspiration that's done it! :D

I can't wait for all the doctors and prosthetists to get back from their festive breaks, so I can drive them nuts with questions and persistence... ;)

Jim T - I had hoped that I could use my prosthesis to drive - I would like to be able to drive any car, not just an adapted one; when mine is being seviced, they loan me one, and I want that to continue!

Greenthumb (Dea) - Like so many of the new amputee sites I'm finding, Stumps R Us is great! I wasn't expecting to find so much optimism and humour! I'm also looking forward to lookin' good (...well, lookin' better!), and being able to wear HEELS again!

PamR - With our stories being so similar I'm very reassured by your positive outcome. Right now I'm trying to imagine how I'll feel when I wake up without the bad old leg (physically, not emotionally - I think that's dealt with now!) and I know things are going to get very difficult before they get better...

jberna (Judy) - many thanks for your detailed and hugely encouraging post - I think the doctors' attitudes you describe were the foundation of my reluctance to consider amputation, and it's annoying that I've been stuck in that mind-frame for so long. It's great to see it in perspective...

justthumbs (Patti) - I've seen your posts as I've been trawling the archive, and what you have overcome is truly inspiring - thank you for sharing it all.

I probably will take up your kind offers to email you as my needs emerge, but I do have one question as I try to visualise my future:

Is it worth aiming for a particular prosthetic set-up? I have read good things about the Otto Bock VASS system and various feet (Ossur Re-Flex, College Park Tru-Step), so should I set my mind on them, or just wait and see?

What part do one's own wishes play in ending up with the definitive "final" system?

Sorry if these are daft questions - I'm new at this! :huh:

Best wishes

Roz :)

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Hi Roz

I wear a suprconduylar suspension leg, with a Ohio Willow Wood Carbon CopyII foot, with no ankle, just a straight connection. I have worn this for over 17 years, and every time my prosthetist suggests changing, or adding an ankle, my answer is immediately - no. (He knows ahead of time what I will say, but wants to give me the option anyway - as he is supposed to.)

I have become accustomed to this particular set up and it works just right for me.

"If it works - don't fix it." Now, with that said, you are probably going to get as many different styles and combinations posted here as there are posts. Listen to them all. They are the voices of their experiences.

Most importantly, listen to your prosthetist. If you trust him/her, take their advice. Do your homework, and then ... ask questions, ask questions, ask questions. There is no such thing as a dumb question. Only dumb people who won't ask them.

Put all of the information in a ball, go to sleep, and then make a decision - to make a decision. If it isn't just the right one, you can always change - No problem. Keep at it until you get what YOU want.

Good luck. I - along with everyone else, will be waiting to hear how this works out for you. We all will be right here for you.

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Hey Patti - I agree with Marcus. Don't worry too much about the bits and bobs just yet. Just get comfortable and get mobile. You'll get to know your body as time goes along, and then you & your prost will be able to make the right choices for you.

And yes, your wishes should play a HUGE part in your final or definitive leg.

All the best, glad to hear that you are in good spirits,

Ally

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:blink::blink::huh: Sorry - you can see that I haven't had my morning coffee yet. That post was for Roz.

I'm such a twit in the morning!

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Hi Roz,

Happy New Year!

I'm RBK, and use my right leg on accelerator and brake with no modifications. When I passed my driving test (in Australia, many years ago), they wanted to give me an "automatic only" licence, until I pointed out that I'd used a manual car for the test, and it's my right leg, not my left, that's affected. I ended up with an amended licence that said "must wear artificial leg", but the amendment seems to have been dropped at some point, it now just says I must wear glasses (which I do). I had no problem with the California driving test either.

I think it would be more difficult to drive a manual car LBK, due to the range of motion required to operate the clutch, but I'm sure others would have more information here.

So, I'd say that once you have a prosthesis fitted and are reasonably comfortable with it, you should be able to drive your car without modifications. I can't offer much advice on the surgery and recovery since I was born without my right foot.

Good luck!

-kam

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Hi Kam;

Happy New Year!

Many thanks for your post - what you say is very reassuring!

I want to be as unrestricted as possible, and not tied to one modified vehicle, because I may occasionally need to drive other vehicles for work, and I would like to be able to change cars without needing to get a new one modified first. I drive automatics out of choice, but it's great to know that manuals are possible too!

I currently pivot my heel on the floor and rely on the little range of motion I have in my bad ankle to get around my foot-drop, and I'm trying to visualise how my current technique may need to change, and with this in mind, I'm curious: like JimT, do you have a solid ankle prosthesis, or one with some movement in it?

Best wishes

Roz. :)

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Hi Roz,

I've been driving an unmodified automatic for 25 years and am RBK. I use my right foot on the "go fast" pedal and my left foot on the "oops" pedal and never have any dramas.

Cat

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Hi Cat;

Thanks for that - in preparation for what's to follow, I've now taught myself to drive my automatic with just my left foot. I don't seem to need a chiropractor yet! :unsure:

Braking is easy, as I've bee a left-foot-braker for at least 10 years, but the "go" pedal is still a bit "digital" - the car tends to be either "on" or "off"! :blink: Counter-intuitively, it feels weird pressing the accelerator pedal hard with my left foot, because we know what happens when you do that with the brakes - hello windscreen! It's coming along well, though.

Once again, Cat, I would be interested to know whether you have any movement in your prosthesis at the ankle; this is of particular interest to me because of my current hip problems - I don't think I could support the weight of my leg above the accelerator, at least not for very long, and ideally I would like to pivot a prosthetic foot with the heel on the floor, as I currently do with my bad foot, if this is possible...

I look forward to hearing any further thoughts.

Best wishes

Roz :)

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Roz, I don't have any movement in my ankle at all. I tend to rotate my knee and hip to get my foot on and off the pedal and rest my foot against the sidewall so my hip doesn't get sore holding my foot off the "Go" pedal. On long trips I get a bit sore but manage ok.

Have always wondered if cruise control would be better but I don't trust myself :lol: I'm lazy enough as it is :lol:

Cat

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Hi Cat;

Thanks for the technique feedback - I'll have to wait and see, and in the meantime keep practising with my left-foot on the "on-off switch"! :unsure:

I had cruise control fitted as an after-market option (made by a specialist manufacturer, not the car manufacturer), and it's utterly fab! Long journeys are effortless now - I highly recommend it...

As regards laziness, an engineer once told me that using the minimum amount of effort to do something is called efficiency! That's now my mantra, of course! B)

Roz :)

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Your welcome Roz that kind of thing is good for me as it makes me think about how I do things cos most of the time I just do stuff automatically and when someone asks me "how do you do that?" I often have no idea :lol: Once you begin doing this stuff it all just happens after a while and you don't think about it. Thinking isn't my strong point anyway :lol:

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Hi Roz,

I have a prosthetic left leg (below knee) and attempted to drive a manual car. Whilst I could use my knee joint to raise and lower my leg to operate the clutch, I found the delicate clutch control required to creep forward in stop start slow traffic to be very difficult. As I drive every day and clock up some big numbers, I considered this to be too much of a risk, and subsequently changed to an automatic .

On balance I wish I'd changed to an automatic years ago, (long before I had the amputation) the modern automatics are just so easy to drive, especially with the option of a 'manual' gear change and a sports setting I can drive it just like I want to.

But the best bit .. I can throw the leg on the back seat, get comfortable set the cruise control and off we go :lol:

On a serious note Roz .. Amputation is a notifiable condition to the DVLA Medical Rules. LINK Failure to do so might have some unpleasant consequences in the event of an accident.

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On a serious note Roz .. Amputation is a notifiable condition to the DVLA Medical Rules. LINK Failure to do so might have some unpleasant consequences in the event of an accident.

You should also notify your insurance company as well. Most of them won't worry about it but having told them they can't back out of a subsequent claim and say you hadn't notified them of your condition.

By the way, I drive an automatic with my left leg on the gas and brake (obviously not at the same time Cat :unsure: ;) ). It doesn't take long to get used to doing it and the control is just as fine as it used to be using the right leg.

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Hi Awesome Blue and Muz;

Thanks for your thoughts.

Back in the early 80s I notified the DVLA about my foot-drop, and they just renewed my licence without further ado; so far, my insurance company has only asked about "medical conditions that affect driving ability", as opposed to medical conditions in and of themselves, and there aren't any, as I'm fully adapted to the foot drop.

I always intended to tell them both about my amp, but I figured there's no need to tell them that in the interim I'm driving with my left foot only; then, when the amp comes up, I can tell them I'm well experienced with left-foot-only driving!

Yes, Awesome, my automatic car has a sports mode that shifts better than I ever could manually, and it has steering-wheel buttons for manual change too - I'm definitely not as good as the auto when using them! - but the manual option is useful on really steep hills or when towing.

Muz, as I've said previously, I can do the left foot accelerator thing, but not very artfully yet; can you remember how long it took to become as good as using your right leg?

Best wishes

Roz.

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Roz, I don't have any movement in my ankle at all. I tend to rotate my knee and hip to get my foot on and off the pedal and rest my foot against the sidewall so my hip doesn't get sore holding my foot off the "Go" pedal. On long trips I get a bit sore but manage ok.

Have always wondered if cruise control would be better but I don't trust myself :lol: I'm lazy enough as it is :lol:

Cat

This sound exactly like the way that I use it, except that I don't have any problems on long trips, (like 1750 miles from Missouri to California, one way). It sounds like Cat and I have the same setup, or similar anyway.

I do use the cruise quite effectively, but natually that doesn't work in the cities.

Play with it. You'll be amazed how comfortable it can be. When I used to get sores on my leg, (early on), I would take my leg off and drive only with my left foot. (Keep in mind, that this is American with the driver on the left). I would just lay my stump over the console. You always have that option, but I feel more natural using my right, (prosthetic) leg on the accelerator. Or "go" pedal. (I like that), and my left on the "oops" one, as Cat calls it.

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(Keep in mind, that this is American with the driver on the left)

Correct me if I'm wrong Jim but aren't the pedals laid out the same as the UK and presumably the rest of the world, ie from left to right Clutch (if fitted), Brake and Accelerator

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Hi Muz;

Having lived in the UK and California, and having driven both automatics and manuals in both places, I can confirm that pedal layouts do remain in the same order - the only difference (apart from the position of the gear selector) is whether the whole set of controls is placed on the left or the right of the car.

Roz :)

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Correct me if I'm wrong Jim but aren't the pedals laid out the same as the UK and presumably the rest of the world, ie from left to right Clutch (if fitted), Brake and Accelerator

Thanks Roz & Muz I'm afraid that I have never driven in the U.K. (although I have been driven around London in the 50's), so I wasn't sure how they were laid out, even though I knew that the steering was opposite. The only other difference would be a center console for the rbka, such as myself.

WHOOPS!!!!! My ignorance was showing - again. B)

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so far, my insurance company has only asked about "medical conditions that affect driving ability", as opposed to medical conditions

That's because it's the responsibility of the driver to tell the insurance company (& the DVLA). My insurance company only asked if I had been told not to drive by a doctor.

It's a bit of a grey area, but a huge improvement on how drivers with disabilities used to be treated; in the late 1980's I had the maximum 'no claims' and the most competitive fully comp. quote was £500, for single driver, 1300cc automatic with hand controls! :o

Lizzie :)

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WHOOPS!!!!! My ignorance was showing - again.

Not at all Jim, it was only after my amputation that I even give that a thought and then like you just assumed it would be a mirror image. It was only when I thought hard that I realised that driving abroad would be even more of a nightmare than it already is for us Brits (and Aussies, Japanese and a few others who drive on the left), if we had to cope with swapped over controls as well. :lol:

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As you know it's been 2 years since my amputations. I guess, I'm way behind on some of things I should be doing by now. I can't wait until I can't get behind the wheel again. Sometimes I feel trapped in the house, because I have to wait until Ray can take me to the store. Then I wear out so fast from standing & walking. I need to use my wheelchair more I guess. But I afraid that will cause me to lazy and depend on it too much. I know when the day comes for me to drive & I'll feel more like my old self again.

Thank you all for inspiring me to work on getting behind the wheel again. Perhaps, I should add this to the resolution list.

Patti

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Hi Roz,

Sorry for the late hello! On a driving note, I lost my leg (also RBK) when I was 13 and have always driven an unmodified manual car, I didn't think that would be possible but the doc at the limb centre said it was, it seems to work fine, although in some cars with small foot-wells and close together pedals it can be more difficult, I guess an auto would be better but best not to restrict yourself, at least if your doc says it's OK you can tell the DVLA that and keep your options open!

Hope everything goes well with your op and rehab etc

Mike

RBK

Scotland

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