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Heather Mills - Amputee Forum
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lmc1972

Hello, start of the journey

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Hi everyone, thank you for allowing me to join, I am a 41 year old woman and just starting on the road to amputation. I suffered a full dislocation and triple fracture of my right ankle in 2005, after a number of various operations including firstly a sub-talar fusion in 2007 followed by an ankle fusion in 2008 I have made the decision to look into amputation as my foot is now severely arthritic and I am in a lot of pain and discomfort.

My consultant has agreed that due to this pain and discomfort I am in and the lack of mobility I have I am making a sensible decision. He has offered to refer me for a 2nd opinion about considering an ankle replacement but he has been reluctant to explore that in the past and I am concerned he is clutching at straws and delaying the inevitable.

Today I met with my local prosthetics user group who were all so lovely, they made me and my partner so welcome and really helped us with their support, they advised me to request an appointment with a different surgeon at the hospital who has dealt with amputations and could look at my medical history and give me a scientific opinion which I am in the process of now arranging, thankfully my current consultant shares the same secretary as the other one so this made the request easier.

After looking on the internet and reading many forum posts including this one I am wondering if anyone else has been faced with choosing an ankle replacement or amputation? Many people have said they tried fusion first or chose amputation over fusion and I by no means regret my fusions, they gave me a few years pain free and were certainly worth trying however at 41 I am hopefully young enough to deal with amputation and return to work but I worry that if I choose replacement I won't get the mobilty I seek and can hopefully achieve with a prosthetic albeit an nhs one and will still be facing amputation in roughly 10 years which is the average life span of a replacement.

Any advice would be gratefully received and I understand everyone is different but it would help to learn about other peoples experiences. Thanks.

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Well hi there and welcome to the Forum. Not an easy decision to have to make, I'm sure...I have no way to compare an ankle replacement to amputation myself, but I am an elective amputee and do not regret my choice. My own choice was between the amputation and yet another attempt to repair a tricky fracture on my left foot. (There had been several attempts over the course of a little over a year, all of which had eventually broken down.)

I will say that the one problem I did have in adjusting to my prosthetic leg was that I did not have anything in the way of an ankle that could flex. Since you've already been dealing with various degrees of fusion, that might not be a problem for you...or you might have a prosthetist who believes in flexible ankles for middle-aged women! (That was one of the few flat-out fights I had with my first prosthetist...he really just did not think I would be stable on a flexible ankle. When I finally got one, it turned out that it made me much more stable!)

Anyway, keep doing your research...if you're in pain that's really restricting your life and mobility, amputation can be a viable solution. And you're right...you're far too young to be tied up with pain!

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Thank you for your reply, my instinct is to go for amputation and it's nice to hear from another elective amputee. I will hopefully be meeting a prosthetist before I have the operation so I will be aware to insist on having a limb that has some movement, I am not very sporty but I do go to the gym as part of my weight loss desire, I can only walk on the treadmill so it would be nice to pick up eventually to a gentle jog and a limb with a little ankle movement will allow this. The other amputees I met yesterday informed me that the limb I will most likely get should allow me to do this but not much else which is fine, even the exercise bike is difficult as the fusion I have has put my foot and knee out of alignment so when I'm on it my ankle either sticks out causing my heel to catch the side or I have to twist my knee inwards which causes pain.

It is really nice that these forums are around as it helps chatting to other like minded people.x

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Hi Imc1972,

Welcome to the forum and like Cheryl said, you don't have an easy decision to make and not one I had to make, but I see from your posting that like myself, you are also from the UK and will be using the NHS system.

I am really glad that you sought the support of a local User Group and they directed you to a consultant that specialises more in amputation surgery, I would say go for that second opinion, I have no idea on the benefits of amputation over ankle fusion, though I would say as someone who has lived quite happily as an amputee for many years, it can be a tough road to travel and I worry that media representations only present one side of the reality of things for many amputees here, so, personally, if I had to make your decision now I would really have to be sure that no more could be done and it would have to be the last resort.

I smiled at the comments about 'gentle jogs on the treadmill' and about the 'limb that has some ankle movement' to allow this, I do like your spirit and that is something that will carry you through, but reality might be a bit different, so you need to bear this in mind. As well as visiting the surgeon, it would probably help you to visit a Disablement Services/Prosthetic Centre and talk to a prosthetic rehab consultant. Ask about the type of prosthesis you will be likely to be given, ask to look at one, all of it, look at the foot especially, and I say this I have sat in the fitting rooms with amputees who are really distressed about the feet, especially what they feel is a lack of movement with the ankle, toes etc., it might not be what you are expecting and I don't mean to be putting a damper on things for you, but some newer amputees find this really difficult and isn't how they perceived things would be.

There are different types of feet and components that might help with different degrees of ankle movement, and you might or might not get this with your first prosthesis which is usually a basic model to get you mobile again to begin and at the start your goal will be to walk and build up tolerances of wearing the prosthesis. Some people master this really quickly, some people find it more difficult, its all very individual, but really your main priority will be the fit of the prosthetic socket, this is the bit your residual limb will fit into and I think you will quickly find that this more of a priority to you than the ankle movement. But keep talking to people especially your User Group and find out what the services are like locally.

I do hope everything turns out ok for you whatever decision you make and should you go down the amputation route you can still live a pretty normal life, whatever normal is, but do bear in mind although in theory though there are different types of prostheses, or components that allow people to do, these days, like the media portrays, almost anything, as your user group I think hinted at, you are probably going to get what they think is the best type of limb to get you walking, anything else is a bit of a bonus really.

Keep talking to people and keep in touch with us on here, let us know what you decide.

.

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Thank you Ann that was very informative.

I don't really have much experience with regards to how the media portray amputees other than paralympics which in my mind is a different kettle of fish to everyday life so I won't be under any false hope there. My support group have already advised me to speak to a prosthetist and luckily I live very close to a centre in Colchester Essex which is great, when I meet with the new consultant I will request a meeting with one to talk about possibilities can you recommend any other questions I should ask please?

I know that my focus after will be to get up and about and when I talk about jogging etc I talk way in the future but here's hoping eh?!

The joint I have at present has no movement in my ankle and the small amount of movement in my foot comes with alot of pain which is why I will be grateful with a limb that only has a little movement and no pain in the foot but I thank you for checking that I am aware, my "buddie" in the group said that I'm to push for more if it's available once I have healed and feel ready to look at regaining some fitness via the gym, at the end of the day I am full of determination and positivity and will do everything I am told to do. I hope to spend my future getting stronger and returning to work as pain free as possible.

Thank you once again for your advice it is all gratefully received.

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Hi I'm not sure if anyone reads back in these posts after this long but I've just stumbled upon it whilst looking through the various threads.

It's been almost 18mths since my amputation and I'm pleased to say that not only was I started on a level 3 activity foot but I have dropped a little over two stone in weight, work full time for the prison service and I do in fact manage a gentle jog on the treadmill as well as daily sessions on the exercise bike!

Overall life is very good for me as an amputee, some days are harder than others with my shrinking affecting my socket fits but I've not once regretted my decision and look forward to what the future has to offer! 

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Well hi there, Imc1972!  There are still some of us who check in here, and I'm glad to get an update from you.  It sounds like you've made a good decision and a fine adjustment to amp life!  Congratulations!

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I gather that a good number of our members have migrated over to Facebook groups...Facebood may yet take over the world:wink:.  But we do have folks checking in here, mostly to make sure that new posters fat a "welcome." 

I'm just an old-fashioned gal who is not a Facebook fan......so here I am!

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