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Heather Mills - Amputee Forum
tee4u

two weeks to go

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hello everybody,

i've been hitting this site a few couple of times and now i've been asked to post my story.

since october last year i live in switzerland and am a 32 years old female.

5 months ago i've been diagnosed with an osteo sarcom (bone cancer). my first fear was that they would amputate my leg but the surgeon said at the time that there was no need to do so. in the meantime they have removed the tumor succesfully 6 weeks ago. but they are not sure whether they have removed enough and to make sure the only option i have is to amputate, of course i couds decide against and just try it anyway. but i'm convinced this is the best way. also i've talked to diferent surgeons and they all came to the same results.

so here i am waiting for the day when i finally will get rid of my tumor. i just want to start with my life as soon as possible anew. i'm fed up of having to let this control me and not letting me do what i want to.

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Hi tee4u!

Welcome to the club (almost). I will have to say I didn't have a choice about my amputation, I was just in the wrong place at the wrong time and got ran over, but I can't imagine having to make the decision to lose a part of my body. You have had to make a tough decision that will ultimately save your life. I have lost several close members of my family to Cancer and one thing I know, even when they tell you it's gone, you just never know. Just think of it this way, a leg is a small price to pay for the rest of your life and yes you will have a life again!!! In the beginning it may not seem like it, but you will.

Stay strong! We are all here when you need us.

Kimberly :D

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thank you kimberly,

it most definitely isn't an easy decision to make. especially since the doctors still can't give me the security that it will then all be gone and i'll be fine.

but i stand behind my decision and i believe it's a small price to pay if it really works.

teresa

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hello everybody,

well i've come out on the other side of the tunnel. thursday a week ago i had my leg ak amputated. to say the best it is all healing perfectly and the wound looks really good. i didn't really feel any pain till 5 days after the amputation but since am going through a bit of a difficult patch. my surgeon started to bandage my leg in order to get it in the right shape and i don't know whether my pain comes from the bandage or whether it is what everyone talks about, phantom pain. i have the sensation of pins and needles in my foot and sometimes it is near unbearable. put no amount of pain killers are helping.

now on the good news, i don't need to wait 3 weeks, as previously expected, to start rehab. 2 weeks after the op i'll get into the rehab clinic. and it's there that they'll make my prothesis. i've been trying to find out a bit about what there is on the market but am a little confused. has anyone here any ideas what i can expect or where i could get some in detail information.

i would love to get some feed back if any one could help me.

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tee4u,

I think you might have the bandages to tight. The tingly feeling is more of phantom sensations then phantom pain. Phantom pain is when you feel like the foot is still there. Messaging the leg will help to relieve some of the pain and I have heard so many say that if they message the sound leg in the same area as the pain in the amp side that helps relieve the pain. Take the pain meds as perscibed if you have pain then take the meds every 4 hrs don't wait 5 hrs or 6 hrs cause it does take time for the meds to get into the system. You'll know when it's the right time to stop taking the meds so use them for now. I made the mistake of thinking I could do it without meds and sometimes the pain was so unbearable that I would be in tears.

I am not sure of the process in your country so can't help you there. The first thing I would guess they will do is cast your leg much like they do when you break a bone. The rest is going to depend on how they do it in your country. I would let them know what kind of activitiy level you want to achive so they can fit you for the right components like foot etc.

Good luck and keep us posted.

Brenda

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Hello tee4U,

I am also a future amputee and am interested to read about your recovery.

I have a deformed foot that keeps getting worse as the years go on, so by removing it, and getting a prosthetic, I will have much better mobility. I am glad to hear your surgery went well and you are recovering well. I have my surgery in early january. I have decided my new motto for 2004 is "New Year, New Leg, New Life". There are so many things you can do with an artificial leg, IF it is fitted right. Please make sure they listen to you, what you want out of it. My prosthetist's theory is "if it hurts you, I am not doing my job right". The socket should distribute the weight so that it doesnt HURT when you walk. Dont tolerate someone telling you it is supposed to hurt. You will slowly just stop being as moblie and find yourself in a sedentary lifestyle you dont want. I learned that lesson with leg braces that didnt fit right.

BEST of luck to you! I will be thinking of you, and sending good HEALING thoughts your way.

Hopefully you will find a new, healthy, life in 2004 also.

Judy

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from what you explain i do have phantom pain but it's funny since i only got it about 5 days after the operation and am therefore hoping that it'll go away again. i believe it's just my body getting to tearms with the loss. i've started to take stronger pain killers but can only really take them in the evening since they make me dizzy.

on thursday i'll enter the rehab clinic, whichi is supposed to be one of the best in switzerland. so i believe they'll know what they're doing. also there must be some pain at the beginning just by getting used to put pressure on a still sensitive part of my body. but i'll be really carefull and try and see it won't be too much.

since i've had had about 3 weeks b4 amputation i really grew to tearms with the whole idea and how funny it must sound i really like my stump. :lol:

also the operation was my point zero. it's weher i left behind the leg that represented my illness and i've gone through death and was born again. and i am really happy like i haven't been in a very, very long time.

does anyone use a c-leg? i am really interested in getting one for myself. it looks and sounds one of the best offers on the market. also i want to be able to go swimming with my prothesis and wear high heels. hehehe :lol:

teresa

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does anyone use a c-leg? i am really interested in getting one for myself. it looks and sounds one of the best offers on the market. also i want to be able to go swimming with my prothesis and wear high heels. hehehe :lol:

Hi Teresa.

It's good to know you're doing well and seeing this in as positive a light as anyone I've known of before. That should make it all flow a little easier for you.

As for your C-Leg question... I had one fitted not too long ago and it's an amazing leg once you've had a bit of time to get used to it, but I'm not sure it's the way to go for a recent amp, and I say this for a couple of reasons. One, your stump will take a while, a long while, even, to come down to its more or less regular size and shape, so starting out with the single most expensive leg on the market is probably not the way to go. The other reason is a combination of advice I've gotten from my leg guy and from my own experience with prosthetics. I wouldn't say a C-Leg is an appropriate leg for an inexperienced prosthetics wearer, but don't take my word for it. I guess the best option would be to go to both your doctor and your prosthetist with this and see what they say.

Swimming and high heels... hmmm... high heels I've seen, though I confess to giving up on them very early on for the sake of comfort and a better, safer gait, but that's just me. I've seen many wear heels comfortably, so you'll have to give it a shot.

As for the swimming with the leg thing... there are prostheses made specifically to get wet, but those are mostly for shower use. In a pool or in the ocean the leg will either increase or decrease your buoyancy and thus your control, plus the fact that without a functional knee that you can bend and apply force with, the prosthesis is just extra weight and drag, as you won't be able to use it for any significant amount of propulsion.

Your best bet would be a purpose-built, application-specific leg like the one I had made for scuba diving. I've tried it in the pool a couple of times, but it's sort of overkill, so the fin stays at home if I'm headed for the pool.

My scuba leg is just a great-fitting socket with a rather long, thin fin secured at the end of a short pylon and it's made in such a way that it has neutral buoyancy. I went scuba diving a couple of times before having this leg made and it wasn't that bad, but it wasn't as natural as it could've been. With the fin it's a completely different story. It's exactly how I remember before I lost my leg.

I'm sorry if this message sounded like a put down to every single expectation you expressed. That really wasn't my goal, but I guess you'd rather I honestly share my own experiences about this... right? :)

Hugs.

Laura

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dear laura,

thank you so much for your advice. i'm actually quite happy for you to speak so frank and to get to hear of your experiences.

as for the c-leg i understand what you are saying and of course i'm quite willing to start with a temporary prosthetics in order to becoming used to using and wearing one. i was just wondering whether to get this one first in order to get the best one possible since it'll be social security paying for it and obviously i don't know how often they'll replace them. but i'll speak to my prosthetist and follow his advice and keep your's in mind.

i love wearing high heels and it's just become a simbol for me that life will be the same again even if different. going out dancing and having fun.

my worry has been going for a walk along the beach and wanting to go for a swim. this might sound really silly but i can't just leave my leg behind, what if someone walks off with it. now i don't think this'll happen here but there are very poor countries and they'll take anything they can sell or think they can. i love to travel and i want to be a s free as possible. ;)

but again i'll ask and let my protheist advice me.

thank you very much.

teresa

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Welcome tee4u, so glad to hear that the healing and everything looks good. I just wanted to say that I too had and still do now and then, that needle and pins feeling. Believe me, it does get better with time, not so painful. You seem to be a strong person with a good attitude, that along with patience and you'll do just fine. Good Luck

Sheila

Keep Smiling :)

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thank you so much for your advice. i'm actually quite happy for you to speak so frank and to get to hear of your experiences.

as for the c-leg i understand what you are saying and of course i'm quite willing to start with a temporary prosthetics in order to becoming used to using and wearing one. i was just wondering whether to get this one first in order to get the best one possible since it'll be social security paying for it and obviously i don't know how often they'll replace them. but i'll speak to my prosthetist and follow his advice and keep your's in mind.

i love wearing high heels and it's just become a simbol for me that life will be the same again even if different. going out dancing and having fun.

my worry has been going for a walk along the beach and wanting to go for a swim. this might sound really silly but i can't just leave my leg behind, what if someone walks off with it. now i don't think this'll happen here but there are very poor countries and they'll take anything they can sell or think they can. i love to travel and i want to be as free as possible. ;)

but again i'll ask and let my protheist advice me.

Hey, Teresa!

Sometimes I have a way of coming across as a bit rough. I guess that's the bit of thick skin we all wind up developing. ;)

I don't know how it works where you are, but if your social security pays for C-Legs, I want to move there... NOW! ;) I've had more than a few prostheses over the years and invariably the ones paid for by my insurance were the most basic of models. Heck, my first leg was one of those old exoskeletal quad-socket things that fit the expression 'wooden leg' perfectly. The last couple of legs, including my C-Leg, I had to pay for myself. So far, it's been worth every penny, though :) Were I in your place I'd be anxious to try the very best right now. My one piece of advice would be: be patient. It will happen, but it probably won't happen quickly enough for your taste.

As for the heels... trust me. I get what you mean. It was a much rougher decision than it should have been for me when I gave them up, but I've found that life won't be the same again, no matter what I do. Of course, that doesn't mean it's worse. Like you said, just different. I guess I've taken the path dictated by convenience and with that reasoning I've been able to justify giving up a few things in exchange for others. It's all a matter of what you feel has the most value and importance to each one of us and there are probablyas many scales as there are individuals.

You say you just can't leave the leg on the beach to hit the water, and I agree. It's not something I would do either. Not in a wealthy country, not in a poor one. Just for reference, I live in Colombia.

What I wind up doing is leaving my leg at home if I know I'm headed for a beach, not just because I may feel the urge to take it off and head for the water, but because sand has a way of killing what are otherwise the pretty resilient components of the leg... that and the fact that I simply can't feel comfortable wearing my leg at sea-level temperatures. Again, this is all my own experience and these are all my own choices. I know of many people who have chosen otherwise and are doing great.

Your closing sentence shows you're halfway down the road to prosthetic success already. Listen to your leg guy. The other half would be 'make sure your leg guy listens to you'. Put those two together and you're likely to have a great experience with your leg. :)

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dear sheila,

it's been just about a week now and already i'm noticing a difference. there were moments when it was near unbearable but it seems those moments are far less and more apart. but i got these drops from my doctor and they just knock me out so i get to sleep all right. i've even noticed that i sleep a lot better, i start to feel comfortable lying on my side or on my tummy which b4 was near impossible.

thanks for welcoming me.

hi laura,

you say you've developed a thick skin you know the opposite is happening with me. i've grown a lot less tense and aggresive. also i feel a lot more at ease with myself. as for an example, i had to go to hospital yesterday but instead of hiding my lost limb i showed off my still existing leg with some really brightly colored tights and a skirt that just reached my knees. i'm not ashamed of how i look i'm proud of having fought my battle. :lol:

yes of course i would like to get the best there is on the market but especially because i want to start traveling as soon as possible and i'd like to do that in the most comfortable fashion. but again i'm in no hurry. i'll be happy to start off with a normal prosthetic and go on to the c-leg at a later date. and since i'm not too sure how and what get's paid here i thought it to be the best way.

tomorrow i'm going into rehab. i've written down my wants and needs and am sure i'll reach an agreement with my leg guy.

i'll keep you posted with my progress.

teresa

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Hi tee4u, glad your Dr was able to give you something that worked so well, b/c you certainly do need your sleep, to keep your energy up for rehab, etc.

Your very welcome and I'm sure you'll find the forum very informative and really nice people to help you however they can. Good luck and keep us posted on how your progress is coming along, k?

Sheila

Keep Smiling :)

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well i've checked into the clinic and i hate it.

they bombarded me with so much information that my head spins. don't know how any one can choose the right prosthetics!!! the talked about so many possibilities and every time i came to one conclusion they changed it all around.

so now what kind of socket is going to be the best. i don't know it's all so strange. but i'll go see the leg guy again tomorrow and ask him some more.

teresa

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on thursday i went to stay in the rehab clinic and i was washed over with so much information that i had my first bad day since the amputation. i got really depressed and decided there and then that i was not going to be staying in hospital for the treatment. now i'm living with my sister and she agreed to take me into rehab every day, and if one day she can't manage i could always go by train. B)

first off was the doctor who tried to give me this anti epileptic medicine to relieve the phantom pain. i decided against it. maybe this was wrong but my first feeling said no, so i went with my gut feeling.

then came physioherapy. again they talked about so many things and i didn't understand a thing.

off we went to see the leg guy. he again told me about the different ways of putting the prostesis on but every time i came to one conclusion whether to go vacuum or to go with the string he changed the story so in the end i didn't know which one is better. if any of you has any input and experience to share i'd be very gratefull. then concerning the different knees and feet. i'm still in a limbo about that...

although i went back the next day and everything seemed a lot less confusing especially since i didn't have to stay another month in hospital that i'm really happy again.

i am allowed to have a c-leg!!! and if i want one i better get it in the first round otherwise social security won't pay for it. but with a c-leg i would need to get one of otto bocks feet. so that means no high heels on that one. also what i didn't know is that i'd need to charge it every night in order for it to work. i've seen this guy who's got a c-leg and he hasn't covered it with silicone or any thing else. he spray painted the brace, not sure what it's called where you attach the prosthesis, with blue flames and it looks really cool.

so there are a lot of things i have to get my head around and obviously i can go back and ask more questions whenever i wish.

loving to hear from you

teresa

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Hi! My name is Vince and I lost both my legs above the knee in a railroad accident in April. I have c-legs and happy to hear you were able to get one also. They are great. :D I'm still learning how to walk with them. Just remember if you are not comfortable with whatever they give you as far as the foot or leg tell them to try something else. YOU are the one that has to live with it the rest of your life. They are there to help YOU. If they can't go to someone else. It may take several trials and errors to get what is right for you. DON'T SETTLE FOR WHAT THEY WANT TO GIVE YOU. GET WHAT YOU FEEL IS RIGHT FOR YOU!!! It will make a big difference in your activity level later. Ask a lot of questions too if you don't understand or just don't know about what they are telling you. Use the computer to do a lot of research too. There's alot of info out there to educate yourself about prosthetics. Well, hope you do well and be sure to keep in touch here. There's a lot of people here to help!!!

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Hi Teresa

Too much information can have a very negative effect. I was offered re-hab but declined. What I did do apart from physio was to attend the Occupational therapy workshop. I did this to see what I could do. I have never made anything before in my life! Firstly I made a bird box. Then I designed a cabinet to keep my first leg (Lennie the leg ) in. Then I built it to also be able to store my guitars and amps.

Before I left hospital I was asked by the consultant surgeon about my experience of becoming an amputee. I told him I was concerned that the leaflets from each department, given at different times; did not show a clear 'pathway' from after the op to walking again. So I didn't know what was right or wrong. He asked me to design and write a new leaflet that clearly shows each stage of proggression, and also linking all the departments involved. I understand that he and collegues in the Amputee action team are using it for the next leaflets to be published.

As regards pain control, some drugs that are used are multi purpose, and can be used not only for killing pain but other reasons. So I would give them a try and see if they are suited to you. Rather this than suffer the pain.

I can't speak for anyone else, but I 'did' whatever felt right for me. After all I have to live my life. There were times when I needed their help, asked for opinions, guidance etc and all concerned were very helpfull.

Now 14 months later I live a very productive life and have a good quality of life.

IMO being an amputee is only a problem if you want it to be. There are some very good inspirational examples of achievments here on this site.

As well as good advice through this site and it's members I have found that the 'gaps' the proffessionals couldn't help me with were filled by everyones knowledge and experience here.

Finally, I am pleased you've come out of it all the right 'way'. And posted how you feel and your progress.

Thanks for sharing

Best as ever

Steve

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hi vince thank you so mucho for your advice. of course i'd never have thought that i could try different prosthetics if one wouldn't suit.

is learning how to walk with a c-leg really difficult? what are all the things you can do with it? would you mind telling me more in details?

thanks

teresa

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dear steve,

too much info can most definitely be a bad thing, especially if one hasn't got mucho of an idea and is looking for answers.

well i haven't given up rehab just decided not to spend the rest of the day in hospital looking at some bland white walls. my sister was very kind in offering me to stay with her and her family to stay while i need to go to rehab.

...being an amputee is only a problem if you want it to be...

i completely agree with you and am looking forward to continue doing the things i love to do.

teresa

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hi Teresa,

I am an AKA from a bke accident in september, I am trying to get a C-Leg from our NHS here in England. Its like trying to get blood from a stone. From what I can make out, the C-Leg is the BUSINESS.

Colin.

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hi colin,

social security here in switzerland isn't too keen on getting us a c-leg either but my leg guy said he might be able to do something.

i'm not too sure the c-leg is good for everything, seems there are some down sides to it but haven't got much of a clue yet. but since i've got the right to get 2 legs i'll make sure my second one will give me all the features i can't get with the c-leg.

has any one got any ideas about skiing being a aka? do you ski with one leg or with a prosthetics?

teresa

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Hi Teresa

AKA's can ski in a number of different ways. It depends on how strong your 'good' leg is. You can opt to ski standing up either with or without your prosthesis. I have a weak knee on my good side so this is not an option for me.

You can also ski sitting down in a 'mono-ski' (this is what I am learning to do). My instructor tells me AKA's will find skiing standing up very tiring and progress will be slower than on a mono-ski but it all depends on the individual.

I've written a story in the topic called 'My Goal' about mono-skiing if you are interested.

Best of Luck!

Mandy

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hi mandy,

thank you for your input. my good leg is still in good shape but my physio guy ment i should stay away from skiing in order not to injure my good knee...

in any case i think i'll need to wait a couple of years b4 i'll try and stand on a pair of ski's again!

teresa

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