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ann

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Everything posted by ann

  1. ann

    Osseointegration Part One

    Hi ya Paul, you'll remember me from one of our inpatient stays at a certain place about three or four years ago. Sorry to hear about you being hit by a car and having some pain, must be frustrating but good you are still getting around ok and keeping working on your cars. Can't believe how quickly time flies by, I am ok, had problems with the socket fit, which has been a bit of a pain ,but nothing new there. Lovely to hear from you on here again.
  2. ann

    New to amputation and new to here.

    Hi Katie, welcome to the forum. I have been a bilateral b/k for quite a lot of years, since I was young, and like Marie says do find that I am usually always warm, quite often hot and when I am walking do sweat a lot, although like Marie says, have been told it is to do with less sweat glands, I do find that I didn't used to get quite so hot years ago when the prostheses were made differently, though of course was younger then and don't notice it so much also when not wearing the legs, but find them that the legs do get very cold quite quickly.
  3. ann

    Hello, I am home again

    Hi Doug, glad you are ok and that the surgery went well, hadn't realized you still had to have the radiation treatment even though you'd had a revision to a/k, so hope all the healing etc. continues well. Take care.
  4. ann

    blisters please help??

    Good luck tomorrow then Char, hope they get you sorted, I think its kind of expected that you shrink quite a bit at this stage, and the more active you are the quicker you shrink, then can end up being inactive whilst its sorted out, which is a bit frustrating, but usually settles at time goes on.
  5. ann

    blisters please help??

    Good advice there from Cheryl, Char. It may be that you have shrunk down and gone deeper into a tighter part of the socket that rubs on the scar, you might or might not be able to alleviate this temporarily with a half sock or thicker sock, but either way get your leg and the prosthesis checked out as soon as possible. If they have given you an appointment for sometime ahead, don't be afraid to ring your DSC for an emergency appointment, you might also want your GP or rehab dr to look at the scar-line. Something else that may help if you have gone deep and are only wearing socks is a silipos sock which is a sock with silicone on the inside, does give some protection & comfort to b/k's wearing socks, ask about this at your next appointment at your DSC they usually have them in stock.
  6. ann

    info about legs

    Hi Aja Sorry to hear about the problems you are having regards getting a good fitting leg. I am presuming you are asking about our NHS service here in the UK, which if you read some of the postings on this and other UK forums you will see is struggling somewhat itself in the present climate. It is very much a postcode lottery here and very few NHS prosthetic users are able to get high tech legs such as C-legs etc, if they do they usually have to fight very hard for it. Also, the NHS, although free at the point of delivery, relatively speaking, is not free as such and is funded through universal national insurance contributions from peoples earnings and other taxes. I am really sorry about the problems you are having and hope you manage to get something sorted out, though don't be too misled about media representations of amputees in the UK, although military veterans might be given high tech limbs they are generally not the norm for NHS prosthetic users here who also have to dream, or fund the costs themselves also. Its not that easy here either. Ann
  7. ann

    One of my stories

    Wonderful for you Ally, its good to know that there are some truly good people out there who go out of their way to help others. Reading your story also made me more appreciative of our NHS services over here in the UK, although we often moan about the services etc. etc., most/prob all of us get our prostheses provided in some shape or form, know I for one probably take this for granted much of the time, and have my share of moans about it, but do tend to forget that not everyone everywhere in the world gets a service such as this.
  8. ann

    New to forum

    Welcome to the forum Dave, I think we have been in contact before, glad you found us.
  9. ann

    HO - Heterotopic Ossification

    Recently had a similar conversation with another amp Doug, this chap was a bit upset that his surgeon had amp'd him a/k when he felt he should have been b/k ... but I guess there were reasons. On balance I think, particularly if you are a single amp that you can perhaps be more mobile as an a/k with a good stump than if you spend most of your time not being able to wear your b/k prosthesis because of problems. But appreciate it must be a huge decision to have to make. Am really interested to hear that they can minimize the growth of HO with radiation, not sure if they do this over here as it wasn't mentioned to me but I might be raising the question as and when. Hope they don't keep you waiting to long to get it sorted for you.
  10. ann

    New to site

    agree Charlotte, and you will get very used to taking these out and about with you as time goes on. In my handbag are always a couple of spare socks, half sock and in hot weather wipes and kitchen towel to dry off the liner.
  11. ann

    Newbie facing hemipelvectomy

    Hi again Steve I have a few links for you regarding some of the organizations in the UK which might be helpful to you, you may have already contacted these but they may be helpful to someone else reading, I have also spoken to someone who knows another amp whose surgery was at HP level so if I get feedback from this person will send you a pm through this forum. The Limbless Association http://www.limbless-association.org/ there is quite a bit of info on here that might be helpful. Also Limbcare http://www.limbcare.org/ , they also have a locked page on Facebook, there are lots of amputee pages on FB, though be aware that though most of us are authentic amps., others post who are not! If you take the normal NHS route to prosthetics, you will probably be referred to transferred if you are an inpatient, from the hospital where you have your surgery to your local Disablement Services Centre (DSC) where you will, usually (depending on where you live) be looked after by a prosthetic rehab team. The Team will probably include a rehab consultant, prosthetist (they make the limbs), physio, OT and nurse. You are still fairly young, and hopefully I can say this without offending anyone older (as am getting older myself now) but as a youngish amputee you'll probably find yourself rehab-ing with much older people and some Centres are not always 'that' geared up to younger amps ... and am not sure if I should be saying this seeing as you have already posted that you are a doctor, but you may find, (again depending on where you go) that you have to be a bit 'pushey' in letting them know what your goals are in terms of walking, etc etc., I think prosthetics is these days getting much more geared up to the needs of younger amps., but sometimes especially if you are more complex, you do have to push and as you are already probably realizing, getting fitted and walking with a prosthesis is very much a process and takes time. Its good you are meeting your prosthetic team pre-op, ask all the questions and ask to look at the prostheses and perhaps meet up with up amps at the same level. Most DSC's have a user group ... some have newsletters, websites, do get-togethers, and perhaps have useful local information. If things don't work out locally, you can go out of area for prosthetics, some people also access the private sector through NHS funding, though am imagining this can be slightly more difficult at the outset when you are needing rehab and recovering from surgery. Usually the route to access this is through your GP/PCT, as you will need NHS funding. Then there is of course the private route too. A lot will depend on your existing living accommodation and the way the hospital you have the surgery in arranges things, but some new amps will go straight home after surgery and others might be transferred to a rehab ward in their local hospital. The Douglas Bader Centre at Roehampton, http://www.queenmary...bilitation.aspx is probably one of the very few hospitals that now does specialist amputee rehab., again, if you are thinking of this route then start talking to people now, before you have the surgery. I read what you said earlier about prostheses looking bulky and hard to manage, and I think most people who don't wear prosthetics probably would think that, and often the first prosthesis is bulky and is hard to get to grips with, but thats where the rehab comes in and its all done in gentle stages so you gradually build up the strength to walk with the prosthesis, till eventually it just becomes automatic. I am not at your level, but in the past have worn some very bulky prostheses but at the time, because they fitted me well, they worked with me .... when prostheses fit well they work with you and don't feel as cumbersome as when they are not fitting, least thats how it works for me. Wheelchairs. In hospital you will probably be given a hospital wheelchair and either at the rehab centre or local wheelchair centre be measured up for an NHS wheelchair. When you first get your prosthesis you have to break it in carefully, it is a process. So probably when you return home from hospital you may need a wheelchair or you might use crutches, a lot will depending on your living accommodation and also what your team recommends, you may be classed as a full time or part time wheelchair user and that may be the criteria for what you are allocated, in your case you might also be asking for special seating, though if you don't think it suits your needs then keep pushing for what does. I am bilateral, so need a wheelchair when I am not wearing the prostheses and haven't found NHS wheelchairs very accessible in my home. In my area they have a wheelchair voucher scheme whereby the NHS will give you a certain amount of money towards you buying a private wheelchair, you can't just buy what you want, you have to be assessed for your needs and the purchase has to be approved, but for me this has been the best route, though it does take some time to go through and maybe something for you to think about at a later date. Generally though when looking at wheelchairs, try and work out when and where you are going to use it most, some are better inside and others better outside ... have a good look at all the wheelchair websites, mine for example has very tiny wheels at the front, brilliant for indoors and has a very small turning circle, but not so good on bumpy ground outside. Also wheelchair width and door widths, can sometimes be a problem, also whether or not you may need rails on stairs or in the bathroom. In your home it might be a good idea to be looking around now and thinking about what is and what isn't accessible. Generally, I find the most important thing I need is space I need when using the wheelchair, so perhaps you can move furniture around to give you more accessibility. You can also hire things like temporary ramps and other bits of equipment that might help in the early days from your local Red Cross http://www.redcross.org.uk/ ... this is quite useful and might save spending money on things that, although are necessary in the early days, though as you progress and get more confident you will find different ways of doing things yourself. Though the rehab OT should also be able to help you with things like equipment and housing adaptations, should you need them. Regards driving, again I am diff as drive with hand controls, but most single amps I know drive automatics, one a manual, but most auto's and I think it depends on what side your amptuation is as to whether you need the pedals changed, am sure someone on here will come on and advise on this but you can get info on driving from http://www.ricabilit...g.uk/index.aspx . There are also local driving assessment centres http://www.ricabilit..._list/mobility/ though you might find you don't need these. You will though have to let the DVLA and your insurance people know, and the DVLA sometimes have stipulations of what you can and can't drive. Not sure if you will be able to claim Disability Living Allowance but Motability http://motabilitycarscheme.co.uk/ might also be useful to you too. I chuckled at your comment about many of us "struggling with the perception that all amps are paralympians/marathon runners/ climbing mountains" etc., which I think is very true for many of us, there are some who achieve these heights but most of us are just getting on with everyday life ... I only really have my own experiences to go by, and people at different levels may have different experiences etc., but life is good and is as you make it really, there are challenges and there are frustrations, sometimes you just have to alter the way you do things a bit.
  12. ann

    HO - Heterotopic Ossification

    Hi again Doug, just reading Neal's posting .... must admit this was my dilemma before my revision a few years ago, though am bilateral so was looking at a slightly different scenario to you ..... an orthopaedic surgeon had warned me I'd probably lose the knee on that side, at the time that came as a bit of a shock though later when I became aware of the damage under the graft then I realized perhaps his reasoning, however, my knee was as far as I knew structually quite sound ... as it turned out I went plastically and remained a b/k .... though I do still have to juggle what I do and how long I can wear the prosthesis for, but as a bilateral and as someone of my age who has lived with the probs of the skin graft for so many years, its for me a good trade off ... and with the help of a really good liner, I still keep relatively mobile. For you though, as a single b/k having skin grafts and possibly having to have a knee replacement on the same side, you might very well be better off above knee. Can imagine that would be a hard decision for you to make as its all unknown, and we never get any guarantees. I do thnk you are wise getting another opinion.
  13. ann

    Newbie facing hemipelvectomy

    Hi Steve, you won't recognize the name but bumped into you on another forum, am so glad the good folks on here are giving you some feedback and links which hopefully will be helpful to you.
  14. ann

    New Hybrid Prosthesis (Aqualeg)

    Do you have a link for Agualeg cover Juan. Many thanks.
  15. ann

    The People Who Stare

    Goodness Kitkat, imagine you did want to give that man a kick ... he obviously thought he was being funny. ( Not.) I think you hardly notice the stares though 'because' you are getting around so well with your leg, if you weren't doing so well or couldn't wear the leg very much, you would probably notice them more. Hope your husband is doing ok too,
  16. ann

    The People Who Stare

    Course you are cool Flip. But I know what you are saying. I also think, bit like Cheryl said that "sexy as hell" kind of really only applies to certain prosthetic set-ups, could well be a guy thing as you say Gimp, but as a female bilat b/k I don't find the mechanics that awesome. Think also that maybe also related to perceptions if your prosthesis is comfortable, functional and your out there being able to strut your stuff. Not everyones 'set-up' is that contemporary, least not this side of the pond, you might have two legs different levels, diff types and some people still have to have belts, buckles, leather corsets, etc. etc., might also be uncomfortable and/or you might have probs that prevent you strutting your stuff, probably most of us have been there at one time or other and can relate to how our perceptions about our feelings and body image can change, then change again when we get things sorted. Mine are b/k, covered with foam and held on with sleeves, they don't look the best uncovered but am certainly not ashamed of them, but there is more to me than my legs, or so I like to think. Ha ha. When I started out on this journey prosthetics were very different, didn't even look like legs as they do today and couldn't wear shoes, you did get stared at and often also unsavoury comments, I became known by my legs and as a teenager didn't like that much, wearing prosthetics definitely didn't feel cool back then, so as soon as I could I blended in, though sometimes, especially when I can't wear the prostheses or take them off because they need adjusting or whatever, I surprise people. The parking thing, I've lived with for years and I think goes with the territory if you are young and have a disability, over here we have Blue Badges and can park in marked parking bays if they are available, perhaps I am looking older as I don't get the 'looks' so much these days when I park in one of these! LOL Nowadays though I am probably a bit more chilled, I don't notice people staring much but you know sometimes people are just interested and I am quite chatty so often get into conversations with them, because of the publicity these days about amputees, sports, and veterans I find people usually quite interested ... another thing I have come across is that some of the people who show the most interest often tell me that either they or a friend/relative might have or have/has had a limb amputated, and they are looking for information ... a couple of people I have talked to haven't been affected at the time, but have been some time later ... interesting I think!
  17. ann

    HO - Heterotopic Ossification

    Hi Doug, I also have bone spurs but mine are in the stump, not in the knee joint. One of the spurs they think is from where the stump was originally broken above the amputation line, and another spur has appeared in the last year or so, for what seems no apparrent reason, from the fib head and growing across the front of the stump towards the other spur just above the end of the tibia. The first, old spur I have been told is probably inactive and doesn't cause me too many problems, it is quite thick so imagine would cause probs to get rid of at this point, however, like yours it does jut out the skin a bit, mine is under skin graft, and part the reason why I wear a pretty thick liner, the more recent spur I did want rid of, but was advised because it was growing inwards to leave it, had it been growing outwards I am told they would have removed it. Can imagine your concerns with yours being in the knee and having an open wound, think I would be wanting something done about that.
  18. ann

    1 year today!

    Can't believe its a year ago already Mary, doesn't time fly .... glad things are going well for you.
  19. ann

    Hello

    Hi Ally, long time no see .... welcome back.
  20. ann

    I am the new guy

    Hi Doug, sorry not ignoring you either, just been bit busy and away for a few days, but welcome to the forum and I am sure you won't feel on your own on here for long. Think you've been given some good advice here from Cheryl and the gimp, regards the sweating and shrinking. Unfortunately sweating goes with the territory a bit, but you'll find it will settle down a bit, you can get products to help with this which some people use, what I do though is just carry some paper towels around with me and if I feel its getting sweaty and slipping a bit I just take the leg off and dry the stump and the liner, I noticed your a below knee like me, I can usually do this quite unobtrusively though have been doing it for a lot of years. Like the gimp says, do try and keep the liner as clean as possible, if you can get hold of more than one liner it helps a lot, especially in hot weather as the liners, esp the thicker ones tend to hold the heat, so in hot weather I will change mine several times during the day sometimes and clean it everytime I take it off if I can. Also to start with perhaps take it off to give your leg a bit of a breather for half an hour or when it gets really hot. Shrinking is something you'll probably going to be doing something of a lot of in the next few months now you are walking more and especially if you are dieting as well, sorry to hear about the blisters, its easy to get caught out, and even those of us who have been at this for a long time can get caught out sometimes, as I myself recently did, and hadn't even after all these years realized I was actually walking on the end, which wasn't good. What a lot of us do when or if we realize we are going deeper in, is cut a thinner sock in half and turn it over so the elasticated bit comes just below the knee area and that might just lift you out enough for a while to stop you going too deep ... its good to carry around a few socks and half sock with you as you might find that the leg is tighter in the morning and then as you are walking throughout the day you gradually go down into it. I know I have times where I can walk into a supermarket and the legs are feeling fine and then half way round, they will suddenly get uncomfortable and I (usually) realize I have gone down to deep. But do be watching for any skin breakdown ... and if there is any let it heal and get to your prosthetist as soon as possible. It probably sounds all a bit like a full time job to you at the moment, but these are things that you will probably very soon be doing automatically and it will all become normal for you. Do feel free to come back and ask any questions, sorry there wasn't many of us around when you needed us last week.
  21. LOL ... yet another advantage to being bilateral!
  22. Definitely need a shoe horn Cheryl ... were your shoes very tight? ... easier when shoes are a slightly looser fit but know that can cause a problem with certain styles, and after a while slip on's can become slip off's when in walking mode.... I tend to stick to a strap and buckle type which works for me, but don't usually have any problems changing them over.
  23. Hi Impala Can't advise you on the money issues ... but can emphasise with your situation. I live in a different part of the world to you with a different system but I too ended up in a similar situation when after many years of walking without too many problems I was assigned to somewhere with new ideas and ended up with problems. My advice to you really though regards the prosthetics, is trust your instincts. I should have done this initially when I was being promised all sorts of benefits of a new type of prosthesis, all through the fitting processes there were niggling doubts in my mind over what I was being told, but because previously I'd had no cause to question what I was being prescribed, I went along with it and I should have addressed those niggling doubts. I've learned it's quite common to be told the reason why the prosthesis doesn't fit or work is because you've put on or lost weight, which sometimes may be the reason, but not always the case especially with someone who has been an ampute for many years. I ended up going to quite a few different places, different people etc. etc., and had varying experiences along the way and somewhere along the line have learned to trust my instincts and not let anyone give me anything I am not 99.9% sure of. Now and again I do come across prosthetists who tell me if I tried this, or used this product/component or whatever, I might be able to do this that or the other and these are the ones I am very wary of .... I am much more confident with a prosthetist who looks at what works for me and starts off from that point. I know this probably sounds very unadventurous to some people, however, having had the experiences I have, and with not the most accommodating of stumps to be fitted, I am both grateful for and protective of the mobility I have, so am now very wary of letting anything jepodize that. Good luck with getting the financial side of this sorted and getting a comfortable prosthesis made, you might have to look further afield for someone who can accommodate you better, but don't give up on it, there will be someone out there who can help you.
  24. ann

    Neuromas are a pain!

    Glad everything is going well Sue. Plastics are quite amazing I think, with mine I couldn't quite work out how they'd been able to do what they did, and like you have a very neat scar line.
  25. ann

    Disability Living Allowance debate

    Just to explain a bit Disability Living Allowance isn't a benefit as such to replace earnings, its an allowance, graded to the disability, to help with the extra cost of living with that disability and help keep people independent. Its not enough to live on, but helps financially with support for people who can't walk very far or can't cook their own meals, or have learning disability or whatever, and it is given to people who are working also, and has been in place in the UK since the 1970's. Certain conditions including those who had two limbs or more missing were automatically given the higher rate mobility component, single amputees or other conditions were assessed and granted on need. The reforms are changing things and DLA is being replaced by PIP. I think what has upset a lot of people is not that the veterans shouldn't get what they are getting , most of us fully support them. Its more really the way civilian amputees are being treated and thought of, and this week there seemed to be almost a media attack on us. On Tuesday, a Government Minister said that using a prosthetic limb did not undermine mobilty and that many amputees would no longer be entitled to DLA, this was followed by an announcement from the PM that Veteran amputees would receive DLA or the new PIP automatically for life. What came across was that civilians didn't need it, but veterans did. This is happening against the background of what Lizzie2 is saying about civilian amps struggling with the services they receive, lack of employment opps, and also of course the general cuts that are happening throughout the country for everyone. The problem is that most of our gov ministers and probably the general public are quite misinformed over the situation and most don't realize the situation for civilian amps., unless they personally know someone and the media talks constantly about the 'technology' that allows amputees to do virtually anything, going alongside media clips of veterans who are doing amazing things on their prosthetics, and everyone seems to assume that civilian amps are able to achieve these levels too. However there are differences in levels of care here, the veterans are given a long period of inpatient specialist rehab, and high spec tech limbs ... which I know doesn't necessarily 'fix' everything, but for the main their care is streamlined, quick access to things that don't leave them waiting weeks or months for appointments, new sockets, components, etc., which is often the case for civilians, and this all helps to allow them reach their full potential and be very active, making it much easier for them to live independent lives and obtain employment .... nothing wrong in this, in fact this is how things used to be in a way for civilians but not always the case now and some, particularly complex amps, have to fight long and hard to get the kind of input they need because really the system has got very overloaded, there are many more amputees nowadays, which is good because people are often surviving things they didn't previously, but the resources haven't increased to meet this demand and I think our NHS system is struggling a bit to cope. I know its all political and media spin but to me it does seem a bit unjust.
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