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ann

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Everything posted by ann

  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. Just really want to get other peoples opinions on this and see what options others are being given around the world for socket design. Have been a b/k for many years, though over the past few years I have had increasing problems getting a well fitting b/k leg here in the UK. Back in the day, most of us b/k's used PTB's and I didn't used to experience the problems I am now. What seems to happen is, when I get a new socket, if it fits, I wear it for a very short time and then the knee area doesn't seem to support me and I end up bottoming out of the socket which causes problems. So for quite a while now I have semi-managed with a too big socket with loads of socks, half socks etc., to try and keep me off the end. Its also now being noticed that there is much more atrophy. I have taken advice on this and know that one option is to have the stump revised, however, other advice is that I don't need to have this done and it should be accommodated prosthetically, though months are now turning into years and I don't seem to be able to get this problem sorted out and all the time my mobility is decreasing. Am currently in the process of another socket attempt (lost number of the amount of these I have had) and from what I have learned it seems to be that b/k sockets and liners are now all designed to be Total Surface Bearing, which apparently includes the end of the stump ...... so am beginning to see that the problems I am experiencing are maybe to do with the type of socket design that I have. Although what I am picking up on is that there are really no options on this and am learning that other B/K's are having similar problems. So what I am asking you good folks on here is, if you are a B/K, is whereabouts in the world are you, and what design of socket/liner are you using and whether this works for you, as I can't believe there are not other options open to BK's here in the UK. Ann
  3. 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
  4. 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
  5. 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.
  6. ann

    itching

    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.
  7. ann

    itching

    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!
  8. Good luck to you to Higgy on Tuesday, vibes heading your way too.
  9. 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!
  10. 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!
  11. 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.
  12. 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
  13. 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
  14. 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
  15. 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.
  16. 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.
  17. ann

    Hello, start of the journey

    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. .
  18. Yep, have heard of others driving bilaterally with their prosthetics around the world Johnny .... but the DVLA won't let you in the UK.
  19. Am not too sure of things regards manual cars in the UK Cakepigeon, I use an automatic with hand controls (as am bilateral) but it might be worth taking a look at this website which might have more information http://www.rica.org.uk/sites/default/files/documents/pdfs/mobility/motoring-after-amputation.pdf If you are in doubt of what you might need etc etc., there are various assessment centres scattered around the country where you can go, try out different set-ups, be assessed etc. etc. http://www.rdac.co.uk to might be some info here too. Also more info at http://limblossinformationcentre.com/organisations/driving-af You will probably be able to 'feel' the pedals etc., through up through your prosthesis, if that makes sense, but obviously not in the normal way you would feel through a natural foot. In other parts of the world people are allowed to drive with their prostheses and do often manage this, but unless the rules have changed since I learned to drive in the UK, you will probably not be allowed to use your prosthesis with the pedals. You are probably also going to have to let the DVLA and your insurance know also about the amp, as its often written into your licence.
  20. ann

    Looking for support (for daughter)

    Hi Marion Am really pleased that Lauren is continuing to make good progress and doing so well, it sounds like she is having an excellent rehab programme which is going to help her tremendously. I echo a lot of what Cheryl has posted, Lauren will almost certainly have days when it all gets a bit much, she will still be adjusting to her new situation and the therapy itself is probably very hard and tiring for her, right now, she is also having to get used to complete changes in her everyday life. I think also questioning her faith etc., is very normal and something many people do at times like this. I know I did and I still remember asking my mum some very tough questions in the early days, so as a mum myself now I can understand how hard it must be for you to see Lauren struggle and question things. I can't really remember the answers I got from my mum at that time, but they must have been the right ones, and in answer to your question about 'how do you cope with this', I think you just probably do what mums do and just be there for them. But be easy on yourself too Marion, because as her mum you will also have experienced loss, her dad too, not physically in the same way as Lauren, but you are having to adjust too and probably had certain hopes and dreams, expectations for Lauren, etc., that at the moment, probably seem distant, but they will return, and I am sure Lauren will continue to amaze you with everything she achieves in her life. I guess boyfriends are more of an issue to Lauren at her age than were to me at the age I was, so she will be thinking about it but its probably good she is able to talk to you about it. My amputations with the legs are very different to Laurens, with different issues, but personally I didn't really have any problems regards that and I think once your Lauren adjusts and builds up her confidence, it won't be a problem for her either. I have been married for many years now and we have three grown up children. What used to be difficult for me in the early years was some of the reactions I got from people, mainly actually older people, who used to make it really obvious how terrible they thought it all was etc. etc., though society has changed an awful lot now for the better, so hopefully Lauren doesn't experience this too much, I still get the odd comment, though have learned to deal with it. Only last week a elderly lady was asking me about my legs and how long it had been etc. etc., and said "I was so unlucky", I could tell the look on her face, so I just smiled and said, "no, I have been really lucky, I survived and have a great life"! Ok, the school situation, you are in a different country to me so things are probably done different, but for me at the age I was, going back to school with my friends was probably the key to getting back to normality. However, I was in a different situation to Lauren, different amputations and I had spent almost five months in hospital, with a large part of that spent on rehabilitating me, so by the time I came out of hospital I was pretty independent, although still obviously had mobility restrictions, though very little was put in place for me regards help, which wouldn't be how things are today here, but in a way it pushed me to do more because I wanted to do what my friends were doing. Like Cheryl says Marion, "hang in there", it will get more normal for you all. I don't live in US so don't celebrate 4th July, but hope everyone on your side of the pond has a great day.
  21. ann

    Hello!

    Hi Cakepigeon, Sorry, I am a bit late coming to the discussion too, and does sound like you've had some good advice already. I am an amputee living in the UK, and like Cheryl says, there are support groups over here that, hopefully, might be able to support you pre and post op. Most prosthetic centre's/DSC's (Disablement Services Centres) in the UK will have some sort of user group, usually they are based around the prosthetic centre. Some are more active than others, depending on the size and organization etc. etc., but most will offer some sort of peer support, perhaps group meetings, get togethers, coffee mornings, etc. etc. We also have the Limbless Association (LA) http://www.limbless-association.org/ and there is loads of info on their website, plus also offer volunteer visiting support. If you wanted to make contact with someone, and wanted to private message me of your whereabouts, I would be happy to try and put you in contact with a local group or amputee from your area. I noticed on here someone mentioned about the ERTL procedure, which might be difficult to get in the UK I am not too sure whether they do this here now or not, but the advice on working with your surgical team is good, with a little bit of luck they are already in contact with your prosthetic team or will be familiar with the optimum procedures that allow the best for you regards the prosthetic side, they may very though already liaise with rehab consultants and prosthetic teams on this, but its worth asking about it. Also regards anaesthetics, epidurals, etc. etc, as others have said, current thinking is that staying pain free might help prevent future nerve related pains. Not sure if you are going down the NHS route or private, things might be done a bit differently, but it might be worth, if you've not done this already, seeing if you can visit your local prosthetic centre, maybe talk to the rehab consultant, prosthetists and other amps about their experiences, have a look at the prosthetics etc. etc. ... as Cheryl says "its always less frightening if you have some idea of what's going on". You might just be able to ring up and arrange this, or you might have to be referred via your GP, though if your op is not until September, you probably have time to do this. I think its probably pretty normal to be scared, I have been an amputee since I was young (so know its all do-able!) and didn't have to make the decision you are but have had a revision amp and was pretty scared myself then, even though I was very used to living as an amputee, however, I don't think that it will be as bad as you are probably imagining, though as Beth says "don't set your hopes to high to start with" you might have up and down days to begin with, your leg will take time to heal and the rehab and prosthetic fitting side can be a tad frustrating sometimes but you will probably get to know your prosthetic team very well in the first year or so, whilst you and your leg adjust to a new way of walking. Keep checking in and let us know how you are doing, as Chery says "we're a chatty group and like to help", if I can put you in touch with any groups in the UK or can help in any way, feel free to message me on here. Ann
  22. ann

    Hi from pre-amp in uk

    Really glad all went well with the op and you are now home again. I would say, look after yourself and that leg at the moment, let it heal and don't rush things too much, it pays in the longer term to get through these first few weeks without bashing it etc. etc., so follow all the hospitals instructions, even though you are probably wanting now for time to pass and to get on to the next stage of getting a prosthesis fitted.
  23. ann

    Hi from pre-amp in uk

    Good luck ..... hope all goes well, seems like you have had a bit of a wait, so am sure you will pleased to get it over and sorted now.
  24. ann

    Surgery scheduled in two days

    Hi Subsea, I think I might have replied to you on another forum but welcome to this one too. I too live in the UK and am in England, I am a bilateral below knee. I think that you will find, in terms of the surgery, that every hospital or surgeon etc., have their own ways of doing things, so things won't be the same everywhere, but think most people are in hospital anything ranging from a few days to perhaps a few weeks, then may go home or be transferred to a rehab ward in the hospital, it is very dependent on individual circumstances and sometimes also how accessible your living accommodation is at home. Before you leave hospital you probably will have input from an OT, maybe a physio also and when you are home you may be visited by a district nurse, or perhaps an amputee nurse. When your leg is healed and stitches etc. removed you will probably do some amputee rehab, sometimes called a walking school, which is usually at the hospital, Disabled services Centre, or prosthetic Centre. There you will do regular exercises, practice on a pam aide (blow-up/pneumatic leg, which gets you used to pressures of walking) and then be fitted with your first prosthesis. Everywhere is different, but its likely you might attend as an outpatient at amputee rehab two or more times a week for about five or six weeks, but again it varies. After you leave walking school, its really up to you to build up your walking, but, it is a gradual process, but you will be surprised how quickly it all becomes very normal. Like others have said it shouldn't really hurt, might be uncomfortable at first, but you will need to keep a check on the skin of the residual limb and if that looks red or sore, make sure you go back to get the prosthesis adjusted. This is usually normal, so don't be afraid to keep going back until everything is right. You will be able to wear ordinary shoes/trainers etc., but the prosthetic foot will be set up to match the shoe. You might find initially jean type trousers difficult as the first prosthesis might be bulky, so get yourself some baggy shorts, tracky bottoms etc., after a while though the residual limb shrinks down and the prosthesis usually becomes less bulky, so regular clothes usually become easier to wear. You will probably get to know your prosthetic centre and prosthetist very well over the next few years. The first prosthesis is really a basic one to get you mobile, but as your residual limb changes shape you will be made new sockets, you might also be given different components on your prosthesis. In England most prosthetic centres often have User Groups, that have regular meet ups, newsletters and offer peer support, you might find info about your local Group online or details at your centre, they may even give you a pack at the hospital with information. You can also find info from the Limbless Association (LA) who also have volunteer visitors to give peer support, information etc., if you want this at any time just give them a call www.limbless-association.org , you might also find some useful info here at the Bader limbloss information Centre.com (sorry it is online, but not letting me post the link). I am sure everyone on here will be thinking of you tomorrow, do hope all goes well and do come back and let us know how you are doing. Always feel free to ask questions. Good luck tomorrow.
  25. ann

    New Hybrid Prosthesis (Aqualeg)

    Hi Peter Not sure where you are located but I am a below knee amp living in the UK and have just got my first pair of water legs, which you can actually use as an everyday walking leg too. The 'water' bit is a waterproof foot and pylon and its fitted to a normal b/k socket, mine is attached with usual sleeves and you just use it like a normal prosthesis, mine have nice blue/black patterned laminated sockets too. The feet are a little different from my everyday feet, but I find I very quickly get used to walking with them, the prostheses themselves are quite comfy to wear and I have found it amazing to be able to walk straight into the water. Ann
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