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Heather Mills - Amputee Forum


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ann last won the day on April 10 2015

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About ann

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  • Amputation Type:
    bilateral b/k
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  1. Hi Standing Tall, I am also a NHS prosthetic user, though do not live in Scotland. Am not sure whether I have met another prosthetic user with CP, but have met some with other conditions, though am hearing more and more about constraints on NHS prosthetic usage and people having to set up Trust Funds, which really concerns me. In England, Prosthetics is now a specialist service commissioned by NHS England, so if you were there, they would be the people to talk to, I imagine you have their equivalent in Scotland. Would also suggest, if you haven't done already, to contact the LA (Limbless Association) http://www.limbless-association.org/and ask them for their support as an amputee living in Scotland, also perhaps your MP, media, anyone really who may be able to help. There are quite a few UK amputee support groups on FB, some are closed groups and very supportive. Also you may have amputee user groups in your local area, though these are usually set up via prosthetic centres, so not sure if you have accessed any of these. Generally,would say that the larger prosthetic centres often have greater resources, more collective experience that might help you better, you'd need to get referred, either by your GP or rehab consultant, if you have one, but may need to go out of your area and my experience is that you sometimes have to push and keep pushing to get the resources you need. Good luck and although you don't say how your CP affects you, you sound like you really want to try a prosthesis, so do hope you get a chance to do this.
  2. ann

    Having problems with NHS prosthetics in the UK

    This was broadcast on the BBC News today http://www.bbc.co.uk/news/health-34054433
  3. ann

    Having problems with NHS prosthetics in the UK

    Hi Desperatewalker Sorry to read you are having problems. Generally, think the usual route to complain is via your Centre first, then upwards to Trust and Commissioning Team. NHS England is now Commissioning Prosthetics as a specialist service. Hope you are able to get things sorted. Were you aware of this https://petition.parliament.uk/petitions/105361
  4. Am enquiring what peoples experiences are nine months post amp surgery. I had a revision amp approximately nine months ago. My leg is healed and no problems post op from the surgery, but the prosthetic side has been difficult and I have actually gone backwards in terms of what I can do, pain levels etc with subsequent sockets I have been given in the last four months since my walking on my first prosthesis at the end of last year (different prosthetist) and am currently walking very little and experiencing quite a lot of pain from sinking down into even new sockets which seem to need 'lining' within a day or so. My set up is a pretty basic below knee prosthesis, which is the norm for me to use. I was using a silipos sock and numerous amounts of regular socks on my previous socket, this one though I have an Alpha Liner and two thick socks, I have only had it about a week but am very deep in it. My stump doesn't look particularly swollen, is, I think a good shape, it did shrink somewhat after revision surgery, but hasn't changed much now for a few months, but I am being told the opposite and that it is the reason I am unable to get comfortable fitting sockets. I am being told this is normal for my stage post surgery, I dont think it is, but perhaps I am wrong so that is why I am trying to find out from others whether or not my expectations of walking/wearing a prosthesis without pain, walking around medium sized supermarkets etc., being to wear it most of the day etc is beyond what would be expected at this stage. Would add that am very used to walking on prosthetics, have been an amp for many years and had previous revision but never had so many difficulties as what I am encountering at the moment. Thanks, any input on peoples experiences at this stage post op, would be helpful.
  5. ann


    Annoying though it must Kevin, I think this is a fairly common occurance with liners, sleeves, etc., I have had that with sleeves also and had them cut into the skin,which has made them itch more and its usually when they have been a bit tight or maybe the material hasn't suited me, interestingly I get it more on one leg more than the other (am bilateral), which maybe to do with one leg being more muscular, but also maybe more sensitive as on skingraft doner area. Either way I have usually changed to a different type of sleeve and there are many types of sleeves. Have heard others say they get similar with edges of liners and that got around this with putting lotion or something around the edge, though check this out with manufacturers.
  6. ann


    Hi Kevin, can you enlarge on the itching. What kind of itching. Is it kind of 'internal' leg itching or something external making it itch? If its the 'internal' kind, I've found there is not much you can do except try and ignore it, there are probably meds that will help, but I have never tried any and think it is probably related to nerves, healing etc. If its the 'external' kind, and there is a rash etc., then thats probably more easy to treat with over the counter remedies etc. Either way, try not to scratch!
  7. Good luck to you to Higgy on Tuesday, vibes heading your way too.
  8. Firstly hope the surgery went well yesterday Cheryl and my vibes found their way. Trust you are recovering well, back at home today. Spent sometime myself in and out of hospital last year and over here too found a complete lack of wi fi, even sometimes mobile phone signal, so know the frustrations!
  9. ann

    HD amputee

    Hi Charu, I don't have the same level of amputation as you and do respect your decision for not using a prosthetic, in many ways can understand that decision so am really sorry if you have, as you say, "been made to feel a failure for not using a prosthesis", not sure if you have been made to feel this way by other amps or people generally, but would say, from experience, that there is a lot of misunderstanding around amputees and prosthetics etc. etc. and sometimes people say things they are often totally uninformed or ignorant about. I am reading also what you say about the problems you had at your limb centre regarding your culture and your level of amputation and the personal aspects etc., and knowing how the situation works in some centres can understand this. Though wonder if you raised these issues with them, perhaps with the centre manager or rehab consultant, as know if you don't bring things like this to their attention they prob wont realize its a problem for you. I have always found the prosthetists etc., very discreet, but even without being of your culture, I and probably many other women amputees reading this will be able to understand somewhat how you feel. These days though, many centres have female rehab consultants, female prosthetists etc. and also some centres see people individually at individual appointments, so its always worth talking to them if you are uncomfortable about anything. Again, and not trying disrespect your decision, but if it was the problems at the prosthetic centre that formed main part of your decision and they couldn't or wouldn't help you, or perhaps, you didn't feel you got anywhere with the prosthetic side, you could try another centre. We do have choice, as far as I know, we can go to any NHS prosthetic centre, although you might have to get your GP to refer you, its usually quite easily arranged. To be honest if my amp was at your level I'd be wanting to go to a centre that had prosthetists experienced in fitting that level, because it is more specialist, there are not so many HD amps as perhaps below knee amps., and at some centres this is probably majority of their work, so a new qualified prosthetist might not have that experience, again its not always easy to get the input you need, but sometimes worth pushing for. NHS England now commission prosthetics, so should you be unsure, it might be worth contacting them direct. No one wants to use an uncomfortable prosthesis and but know that starting out on a prosthetic, whatever level, isn't always comfortable to start with, many of us have to keep going back for adjustments and refits. It can be a pain and inconvenient and if you are used to getting around quickly it will be frustrating having to suddenly slow down and get used to walking with a prosthesis, but things usually get easier as time goes on and having been around many prosthetic centres over the years have met quite a few people who are at your level who have been quite successful with using a prosthesis. So as Chrissy says "keep an open mind on that" and also bear in mind that whilst using crutches and one leg is quick at the moment, as we get older as amputees (as I am finding out) the wear and tear on our bodies can become more of a problem. Do wish you lots of luck ...... and you can wear heels with prosthetics, and you don't 'have' to wear trainers all the time, just let them know thats what you want, if you want heels!
  10. ann

    Ladies Question re Wearing Dresses

    Hi Charu, Welcome to the forum, I am really with Kate on this one, both with the clothes and also with the men. Although now older with grown up children of my own, I was one of those younger people Kate mentions who met their partner after their amputation, in fact I did all my dating post amp. and at that time I never actually thought about it being a problem .... and hopefully that will be the same for you as time goes on. Everyone is different though and have our own experiences, I think I was fortunate to be younger when it happened to me and still at school so had those years without the pressures which sometimes come later, but there are really some great guys out there. And, am prob sounding like a mum now, but maybe concentrate on yourself a bit, losing your leg at 18 must have been really difficult and I imagine put things on hold, so maybe now need to make up that time .... enjoy uni and have fun.
  11. Hi Jacek It probably would be worth visiting Roehampton, especially as it is so nearby. You don't mention if you are going down the private or nhs route, and they might differ a bit, as it might do wherever you are treated, but in the first year or so, whatever type of prosthesis you use, you will have a fair few socket changes, because your stump will be shrinking, and you will discover that 'socket fit' becomes very important whatever type of prosthesis you use, it is all very individual and whats best the one person might not be so good for another, so bear that in mind when you are talking to different people. Good luck with it. Ann
  12. Hi Icarus Welcome to the forum here and sorry to hear about your struggles you've had with your leg. I am not an AK amputee (am b/k) but do live in the UK and would recommend if you haven't done so already, to get in contact with or look on the LA (Limbless Association) website http://www.limbless-association.org/ which has info and also operate a peer support network, who may be able to link you with an a/k amp, who has been down a similar route to you etc. etc. Also note that you live in Croydon and wonder if you are aware of the Douglas Bader Rehab Centre at Roehampton which is not too far away from you, again am sure they would give you advice and is somewhere where you would meet other a/k amputees. There is also a local Limb User Group that may be able to help you http://www.rlug.org.uk/. Would mention that there are probably not too many NHS amputees using the Genuim at the moment, although the C-LEG is becoming more available, so you may need to cast your search a bit further, perhaps via links to private centres or the military guys at Headley. Sorry if this hasn't helped much, but wish you luck. Ann
  13. ann

    Looking for support (for daughter)

    Hi again Marion, came across this on a different forum and thought of you and Lauren, not sure if you have seen it or how helpful it will be but thought you might be interested http://armdynamics.com/pages/what-you-need-to-know
  14. ann

    Looking for support (for daughter)

    sorry, I have been away too Marion, having a revision op on one of my legs, but glad to hear that Lauren is continuing to do well and things are getting a bit easier for you all. It is still early days for Lauren and you all but I am sure Lauren will continue to surprise you with everything she does as it all gradually becomes more normal for her. I don't know anything really about prosthetic arms, but I do know that prosthetics generally usually feel uncomfortable and heavy when you first use them, the body has to adapt to them, with prosthetic legs I have always only worn them for short periods to start with, about an hour or so first day and then build up gradually every day, mine have never been comfortable at first especially first ones after surgery, so as I say no idea about arms, but it doesn't work for me to wear them and then not wear them, I have to do it every day, even if they are not comfortable, but do it very gently. So I dont know if this is helpful to you or not, especially if the prosthetics get in the way of her using her feet, but I guess she will get used to doing what is best for her. Really glad all is going so well though.
  15. ann

    Looking for support (for daughter)

    Hi Marion, I am glad Lauren is making such good progress. Its good she has made contact with someone of her own age and in a somewhat similar position, but it might be she needs time to get her own head around things and might not want to get involved with amputee forums or groups at the moment. No doubt she will in time, but maybe not yet and needs to do it on her terms, if she's back on the internet she will probably do a bit of investigating at some point. When I was a new amp, a bit younger than her, I had no contact with amputees of my own age, let alone bilateral amputees, there wasn't the internet etc. then, but people did try and encourage me to join local disability groups which I didn't feel I identified with, so I was quite against joining anything like that and even at that age it annoyed me that people would think they knew what I needed. What will be important to her though is her friends and peer group and like Cheryl says "you get to treasure when you can get out with your friends and just live for a while", for me my friends were the key to getting back to a normal life and now all these years on I am really appreciative of them for that. Your location might be very different from mine, which is slightly remote, but I imagine there are not that many bilateral arm amps, and when you are young, unless like Cheryl's experience, you get to meet 'an actual active amputee' who has similar levels to you, it can almost have the opposite effect. As a mum myself, I can imagine you are on a bit of a journey too Marion, but it does sound like Lauren is doing really well and that you are all definitely, as you say, moving in the right direction.