July 9, 2014 at 7:46 pm #2143327667
Hi all, I would like some advice please, I suffered an accident some years ago that resulted in a full dislocation and triple fracture of my right ankle. After it healed I suffered terribly with arthritis which resulted in a fusion to ease the pain. I had a few years relatively pain free walking was ok but I could no longer run, this wasn’t a problem as I am far from sporty lol. However I began to feel my foot start to deteriorate, I put up with it as much as I could, my consultant is great and went in last October to try and tidy it up, however my back has also had to be operated on (thankfully succesfully) and my knees are now starting to hurt. My last scan showed severe arthritis in my foot joints and on my last appointment my consultant said it was probably time to revisit a previous suggestion I had made about amputation. He said he didn’t want to fuse my foot as that would leave me with very limited mobility and only push the problem onto other joints, he said I was thinking sensibly by considering amputation and said he would refer me to another surgeon who specialises in this to discuss my options.
A few days later I received a letter from him saying he had given it further thought and asked if I would like to be referred to a specialist in ankle replacements? This confused me as he is an Orthapaedic surgeon himself and is listed on the NHS website as performing them himself, he had also rebuffed my request for a replacement before my fusion saying I was not suitable. I telephoned his secretary but have to wait until September to meet with him to discuss it, in the meantime I have asked to be referred to specialists that cover both operations so I can gain as much information as possible. This is being done but the waiting lists are very long.
My question to you all (if you have continued to read this essay!) is what your opinions are or experiences are? I have done a lot research online and feel I would have a better outcome by choosing amputation, I know it is a long road but ultimately I would be left hopefully with a prosthetic limb that allows me to have an active life, I have started to exercise as best as I can and want a healthier and fitter lifestyle, my consultant agreed before suggesting replacement that I have the right outlook and positivity and on condition the operation is a success I will have a better life choosing this route, replacement as successful as it is will still limit my mobility and doesn’t guarantee the hopes I have for being more active, does anyone have advice about this please?
I have shortened my story considerably so please don’t think my pain or past has been limited to what I have said on here, this has been a long 9 years living with this and my consultant has been excellent trying every possible solution to rectify this but after many operations and pain medication the time has come to come up with a permanent solution, I know either operation will be the start of another long road but hopefully with a lot more positivity than just living with the current pain I am in.
I apologise for waffling on but felt the more background you have the more informed you can be, I apologise too if I have offended anyone with my naivety, that is certainly not my intention but I just want to make the best decision and can only learn by others experiences.
Many thanks in advance.xJuly 10, 2014 at 9:37 am #2143327680
I can’t comment on your suitability to prosthetics, it would usually get assessed, post surgery.
Once accepted you start speaking to the nurse from the prosthetics centre in your area (my experience, so suspect you’d get something similar).
First 18 months, you will go through several limbs, while the stump shrinks after surgery (swelling, loss of muscle tissue etc.). These limbs tend to basic, but flexible for day to day life. I can walk, climb steps, stairs and drive with mine.
However anything more, is likely to require a private purchase, as the NHS only tend to supply a basic limb, sometimes with a spare!
Prosthetics is quite specialised, so costs are high, and it’s all tailored specifically for each person, so little room for mass production and lower costs.
Therefore I would suggest you speak to your local prosthetics centre (NHS) and find out what they will and won’t supply, to give to a picture of any limitation(s) if any?
Limbs tend to be used for specific purposes gym, running, swimming/shower to name but a few, and they all cost.
I’m not trying to put you off, but I was not told this up-front, and simply found out afterwards, that yes you can do most things with a prosthetic limb, if you have the money to pay for the correct limb! If you don’t have the money, then it’s only the basics…
Weight is also important, as any increases/decreases in you size is likely to affect the shape and size of the stump. Which in-turn requires a new leg again!
Hope this helps, but better to have the full picture.July 10, 2014 at 11:08 am #2143327681
Thank you for your reply, were you given a choice about amputation? If so did you ever consider or where you offered a replacement?
I was aware about the costs of other legs, I am hoping to meet with a prosthetist at the local hospital (Colchester, Essex) which has a very good service. I think all I would be doing post op will be gym based so I don’t think I will need anything specialist, it sounds daft but before my accident I hated jogging yet now I dream about being able to speed the treadmill up to a gentle jog which my fusion doesn’t allow, or just have a muck about in the park with my kids, nothing too sporty so I am hoping the NHS although basic will still cover this. Also I have been told if I was to choose an ankle replacement this sort of activity could wear out the joint faster and I don’t want to have to go through this again so I am looking more towards amputation.July 14, 2014 at 7:29 am #2143327686
Hi to Inc1972,
Am agreeing with much of what JSolman says here, though, however personally, based on my experience of being an amputee and relying on NHS prosthetics etc., my decision would be based more on ‘being able to walk’ than dreams of ‘speeding the treadmill up’ …. so if I was able to walk already and manage pain, I would be cautious. I am not saying that the treadmill is something to rule out and theoretically nowadays possible for some amputees but as Jsolman says prosthetic limbs are generally for a particular purpose usually walking and the reality for most of us is if we wanted a running blade or something extra that would be costly and we are probably talking thousands of pounds privately, so do bear that in mind, walking is probably going to be your priority, if not goal in the early days.
Also, having read where you comment about the problems you have had with your back and your knees, do talk also to the appropriate specialisits about these because they are the parts which take their toll when using prosthetics. As a below knee amputee, the fitting around your knee will be crucial to the fit of your prosthesis and if not taking all weight, it will now have to perform role of taking some weight/pressure around it. Likewise your back, I am learning that back problems also sometimes go with the territory of walking on prosthetics, though I myself have been doing it a long time but sometimes amputees find walking on prosthetics can bring on back pain, so do get that all checked out too as this all impacts on your future mobility as an amputee.
When you meet with the prosthetist, as you hope to, try and also meet with the Rehab Consultant and talk about the back/knee issues, also if you can talk to other amputees who attend that prosthetic centre, they should probably have a User Group which will be listed who will have amputees who will probably be happy to talk. Sometimes its not about the actual services that are offerred, with prosthetics its probably more about the skills of the different prosthetists, fit of the actual prosthetic sockets, ease of getting appointments, and also their rehab programme. You are probably going to need some specialist physio input, there is something call the pam-aide which is a kind of framework and blow-up pneumatic prosthesis which gets your legs used to tolerating the pressures of walking on a prosthetic, so you will probably get started on this before you are made a prosthesis, as well as specific new amputee exercises, so bear all that in mind too as probably the more rehab you can get, the easier it is going to be when you are fitted with your prosthesis. I always say to people in your position, if you can take a good look at the kind of prosthesis you will be given, take shoes off, look at the feet, the toes, the ankles, I say this because I have sat in fitting rooms with people who are quite distressed that the feet/toes etc do not move as expected, it seems odd, I know, but all these things can throw people when they are trying to get to grips with prosthetics, so the more you know before hand, if you get that chance, I think the better really.
Sorry if I am also painting a bleak picture, but think you do need to know how it is, I worry that the amputees we see in the media sometimes give a false impression of the realities of being an amputee especially at the moment with cutbacks etc., having said that I have lived for over forty years as an amputee and lived what I think is a pretty normal life and when the prosthetics are fitting life is very good, though mine wasn’t a ‘choice’ so I’ve not had to make the decision you are having to make now, which must be very difficult for you. Wish you lots luck for the future, whatever decision you make.July 16, 2014 at 8:54 pm #2143327696
Thank you Ann, I think I have just replied to you on my other post on a different forum so apologies if I repeat myself here, I don’t want you to think I am under the impression that I am going to become some big runner after the amputation lol. I said that I dreamt of speeding up the treadmill but that doesn’t mean I intend to, I also dream about winning the lottery and we all know those odds lol. I have joined the local user group at my local hospital and they’ve helped no end, I looked at their limbs which varied in movements and I am aware that for at least a year the focus will be to get walking before I think of anything else, I have also been told our hospital tend to offer the prosthetics that suit your needs as best as they can but again my focus is more on being in less pain and have more mobility than anything else. I appreciate your comments about how the limbs look etc, I really don’t mind what they look like it will be more about their use, I am not a very girly girl in fact the complete opposite lol, I live in jeans and trainers so I really don’t mind about appearances but again I thank you of thinking of the little things that tend to get overlooked.July 21, 2014 at 8:22 pm #2143327698
I did have a choice (half a foot or no foot), either way there was going to be an amputation.
The only issue in the gym is weight to be honest, increase weight on the leg and the spring in the ankle area of the limb is weaker. Increase the ankle strength and its like a block of wood when there is no additional weight etc.
There are active feet, that allow for a light jog, however other components may be required e.g. a shock absorber to stop the end of the limb being pounded through shock in the socket, but I’m sure your prosthetist will discuss options with you.
As they say “one step at a time”.
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