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ann

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Everything posted by ann

  1. Hi, sorry don't your name but can understand the problem you are having as I have had a similar problems which seem to be due to having had my amputations done when I was young and now also having what you describe as a 'long and skinny stump'. I too used to use the PTB (Bar) type socket and definitely prefer this to total surface bearing which now seems to be made as the norm, but which I find personally quite uncomfortable to wear and end up putting weight on the distal end which has aggravated that and the scar line. Not sure on the upgrade front, though I have had quite a lot of socket re-makes made this last couple of years and I still seem to end up with the same problem, so can't really advise on that. My prosthetist has tried to accommodate this by making me a hybrid version where I take some weight below the knee and some weight total surface, but has also made the socket longer and filled with a soft fill which can be adjusted, which does work some of the time, but not completely all the time. With regards gel socks am currently using an otto boc 3D anatomical polyurethane liner which is very well padded in the boney areas, which is helping solve some of the problems, though don't find it comfortable in the hot weather. Hope you get something sorted, if you do then let us know on here, I am know of quite a few long term amputees who are having similar problems at the moment.
  2. Thanks Kathy, Its a difficult one, as I am not living in the US and the input I have access too regards prosthetics is limited, though am talking to them about my need for more specialist or alternative input. The system here doesn't really cater for this so I am again pushing boundaries a bit. I haven't tried a seal in liner, though have seen others using them, I haven't been using a liner at all, a liner on this leg is a new venture for me, they trying a new sort of polyurethane liner which is slightly shaped.
  3. ann

    Disability Living Allowance debate

    To be honest, I don't think the DLA/PIP changes have hit too many existent claimants yet, I think PIP is being assessed for new claimants currently and being phased in gradually, by location for existing claimants over the next few years. I imagine the changes will dramatically affect the lives of people with disabilities in the UK, including amputees, many of who do currently claim DLA, with bilateral amputees losing their automatic entitlement and those who are successful in being able to continue to claim who are currently under 65 years of age will lose their entitlement when they reach that age.
  4. ann

    Tumbleweed Time again?

    Yes Kate, always keeping an eye on the forum, but it has been very quiet lately. As most will know that here in the UK have had the most awful weather, high winds, heavy rain, flooding, power failures etc. etc over the Christmas holiday, warmer than probably some of you have had in Canada and the US, but a milder climate over here often results in more rain than snow, but both have their disadvantages. So do hope everyone here is ok and managed to have a good Christmas and New Year .... hopefully the weather is improving now as we have had a couple of drier and sunny days over the past week, hopefully its not our turn for the snow.
  5. ann

    Hi from pre-amp in uk

    Hi Mike Just wanted to wish you good luck with your op. I am a UK amp, didn't have to make the decision you're having to make as my legs were amp'd following crush injuries immediately after an accident, but do know about living life as a below knee amputee and don't have too many complaints about it really, my life has been pretty good. I am also mum to three, now grown up children, who know nothing but their mum being an amputee and as children they often accompanied me at prosthetic fittings and took it as pretty much normal really. I don't think I missed out on too much being an amputee mum and though they might well have their own opinions, I don't think they missed out on too much either, we are just a normal family and they seem to have grown into reasonably adjusted adults, so everything is possible. As Kate has said, there can be frustrations along the way. Having had revision surgery a few years back I would probably say the time between the surgery and prosthetic fitting probably the tedious bit, though you will be eager to get going on your prosthesis, get the healing bit right and the prosthetic fitting will be easier and everything does depend on that prosthesis/socket fitting you correctly. As Kate also says, the first year or so your leg will be shrinking, you will probably be back and forth for numerous socket fittings but it does all settle down gradually and when you look back in six months or so you will probably be amazed at how well you have progressed. Like others have said, find out as much info as you can, I think its pretty much routine in the UK now for pre-elective amps to visit DSC's, talk to rehab consultants, prosthetists etc and meet other amps and learn about their experiences, ask also about the type of prosthesis you are likely to be given initially, think it always helps to know but remember the first type they give you doesn't automatically mean that's the only type you will use, there will no doubt be many changes over the months and years to come. Hope all goes well for you, ask any questions on here and don't forget to let us know how you are doing.
  6. ann

    winter is coming

    Thanks for the links Mick, down here in the South we don't get anywhere near the snow, usually, that you get up in the North East. I bought the first ones in your first link, a few years back and used them several times in the last year or so which have helped a bit but like the look of the more heavy duty ones in your second link, so thanks for posting that. Lets hope its not too bad a winter this year.
  7. Brilliant Cheryl, really pleased for you ... its a great feeling to be vertical and mobile again, isn't it? Fingers crossed that the Teflon-ish patch continues to do a good job ...if it does let us know as I think quite a few of us here might be interested to know more, as they sound very useful.
  8. ann

    Hi All

    Sorry folks, not sure how I quite changed the formatting in that post, so if it looks odd to you on screen and is unreadable, let me know and I will post again.
  9. ann

    Hi All

    Thanks Harry, as Cheryl said it makes things a bit clearer as to the information you are after. Fortunately, or perhaps unfortunately (depending on how you view things) I didn't have the chance to mentally prepare for my initial amputations also no previous experience of pain so can't really comment on how to mentally prepare yourself in that way. I did however have a revision amp many years later and then mainly prepared practically for what I knew would be the situation, but even as an already amputee the emotions did hit me at different points after the surgery and what I tried to focus on then was thinking about the reasons why I'd had it done and how it would benefit me enable me to be more mobile etc, and was definitely focussing on what I would be doing the following summer. Am not quite sure whereabouts you are,as things are done very differently in different countries , in the UK even in different regions Think Cheryl gave you some good advice in talking to your 'team' about your options regarding pain relief etc. current thinking seems to be that our brains 'remember' pain and so if they can block any pain prior, during and after the surgery it will hopefully prevent the occurrence of future pain further down the line, so if you have been experiencing chronic pain in that leg for some time, that would be something to talk to your team about. Other things to think about may be to start thinking about your home situation and how you will manage with one leg after the surgery and before you are walking with a prosthesis, though you may have things in place already to help with this, whether you will go home quickly from hospital, or have inpatient rehab etc. etc. Again different things are done differently depending on where you are, if you are in the UK it might be a good idea to visit a Disablement Services Centre (DSC) at a nearby hospital and find out about what's involved in the rehab, take a look at the type of prosthesis you will be given initially some people are given physio pre surgery to strengthen upper body muscles etc. etc. but probably similar to you are doing here and talk to other amps and finding out how they manage and finding out information. Mobility post op is, to a large extent, dependent on getting well fitting prostheses, so probably for the best part of your first year you are probably going to spend quite a lot of time having prosthetic limbs/new sockets made, so will spend quite a lot of time sitting in prosthetic fitting rooms ,you may feel like you are going three steps forward, then one step backwards in terms of progress at times, or they may need to try different set ups as in the first year or so your leg/stump size will change quite dramatically as you shrink down from the surgery, so be prepared for that also, and to a certain extent for always you will be visiting prosthetic centres for adjustments etc It can be frustrating when things do not seem to be coming to plan as quickly as you'd expected them to, though as with everything, progress (whatever that is thought to be) varies from person to person, location to location, but generally patience, with yourself as much as anyone else, but don't worry most of us get a bit frustrated with the processes at times but things usually work out.
  10. ann

    Hi All

    Hi Harry, welcome to the forum. I noticed that you posted this under the heading Phantom Limb Pain and I wondered if that was one of your pressing concerns regarding the surgery and living as an amputee. Must admit I don't really know anything about Chronic Pain Syndrome, but know that 'phantom pain' is a concern I hear from non amputees and I get questions all the time about 'if I get it' , 'different things people have heard cause it, etc. etc'. When I became an amputee no one told about Phantom Limb Pain (PLP) and to all intents and purposes it didn't really exist in my vocabulary but what I've learned over the years is that PLP means different things to different people, including some healthcare practitioners who will readily identify any discomfort as PLP. For me, apart from initially after surgery when I remember being acutely aware of a painful non existent limb, as time went on, this changed to painless sensations, like wriggling your toes, but the feet don't really feel like they are 'not' there, if that makes sense. Any other discomfort I have experienced over the years, is definitely in the legs themselves and usually caused by something going on in the legs or perhaps an ill fitting prosthesis, nothing phantom about it, though I have found if the nerves or nerve endings are affected directly then this again will give uncomfortable feelings of the non existent limb similar to what you'd experience if you'd recently had surgery and usually for me this is a signal to check things out, make sure the prosthesis is fitting properly and if it continues I get the stump checked out too, but, for me, there is 'usually' a reason for it, to me I just think of it as nerve or leg pains, although I find this is what is often referred to as PLP. This, for me, is usually short lived but, again, we are all different and experience things differently. I am not sure if this is what you were asking about, but did notice you posted about phantom pain and it is a topic that comes up quite often, so hope this helps alleviate any concerns you have about PLP. Do wish you all the best for your surgery on the 12th.
  11. ann

    prosthetic "skin" covers

    Hi Jane, I am currently using the foam/stocking arrangement on my bilateral b/k's and the weight of both legs is about 14lbs (British weight), though the weight of the actual foam is very little, but I wore a pair uncovered for most of this year and they were actually heavier than the covered ones I am wearing now, so imagine a lot depends on the weight of the prostheses themselves. Though have worn the silicone covers over the foam too and did find them a fair bit heavier, also found I didn't get on particularly well with the overall appearance of the covers, particularly around the feet/ankle area and found they almost stuck to my clothes, so was covering them anyway and eventually returned to just the stockings over the foam. With regard heels, I sometimes feel that although we have seem improvements in the types of feet now available for prosthetics, my own experience has been that I now seem to be more limited in styles/fittings of shoes and heel heights that I am able to wear. When I began wearing prosthetics, back in the 70's I think the feet were still made of wood, technically not so advanced, but I never had any problem with the fit of normal width fittings, which I often do nowadays or getting them adjusted to wear fairly high heels, in fact I was told initially that it was beneficial to wear some heel and whilst I am now wearing about one and a half inch heel have been told on my present feet its about as high as they can go. My experiences are that its not so much the height of the heel that is the problem (as long as the foot is able to adjust), the height of the heel not really making a difference once the foot is accommodated to allow for the difference in height, for me its been more the width of the heel base that is the issue, chunky heels are fine though find as a bilateral, the thinner more stiletto type, very difficult to balance on.
  12. Hi Cheryl, I have very little knowledge about feet, for obvious reasons, but understand the worry and frustrations that are felt when wounds re-occur or don't heal up as quickly as we'd like, days can feel like weeks and weeks begin to feel like months. So glad you are hanging on in there and staying positive, it sounds like you have a good team there treating you so do hope that they get things sorted out for you soon. Pleased you are enjoying your singing, I don't have a great singing voice myself, but have heard about how beneficial it can be to our well being and have worked out its a bit like deep breathing in that when you concentrate on it you are not worrying about other things. Good luck also with your research and decision making and do agree about 'life ..... being complicated'. Take care.
  13. Am sending some good vibes also Cheryl, lets hope that this is just one of those 'blips' which will heal up just as quickly as it arrived. As Kate says, try not to worry too much, your plan of action sounds very efficient and it sounds like you have the expertise at hand, so keep all those positive thoughts going and hopefully your foot will be right again soon. Take care.
  14. Well done Kate and glad you are now home again after having such a positive experience at the Douglas Bader centre. Like kate, I too have had the privilege of being treated at this centre and agree about it being an incredible place and like to spread the word that to people about it, Particularly those are having continued problems with prosthetic fittings and/or those with complex amputations it is still possible to be referred here. You probably will have to apply for funding through your GP via NHS England, as people are not usually automatically referred by existing providers, which is a pity because I am sure in other areas of healthcare people are routinely referred to more specialist care, should they need it. Good luck Kate and hope you continue long and well .... you never know you might make Rio yet!
  15. ann

    Bone Spurs

    Goodness what a difference in thinking from this side of the pond, when I registered concerns over a new bone spur that I knew I had, it seemed that I shouldn't know about it, least of all dare to ask about it and was questioned on how I had found out !!! anyhow having gleamed as much info on this as I seem to be allowed to know I have been told that if the spur is growing inward, it should be left alone .... couldn't quite make out how yours was growing Stinker, and whether it was causing problems, so not sure if this is any help to you.
  16. Just to let everyone know that I have a message from Kate and she has asked me to say "Hi" to everyone on this forum. She is having some internet problems at the moment, but is doing well and says she will be back in touch with you all soon.
  17. ann

    Hi, Mike from the UK

    Hi Mike, I am also a Bi-lat b/k and also in the UK .... not sure how long I have been on here and not sure if I remember you ... but always nice to meet another Bi-lat.
  18. ann

    Able-bodied ignorance....

    I probably do the same as Cheryl with an 'age appropriate true story', though because my prostheses have usually been covered I don't generally get asked that much, though with my own children I told them the whole story long before they were probably able to understand, but since it was a road traffic accident, used it regularly to reinforce road safety measures, but by the time my eldest was about three years old, she was telling everyone the story wherever or whoever! With adults I pick and choose, its usually when the prosthetics are not fitting too well and I am obviously not walking that good and will quite often get asked if I have had some hip or knee surgery, or perhaps 'what I have been up to' sometimes I tell them, sometimes I don't, depending on how they approach it and how I feel at the time, usually though they are just interested and now and again its quite coincidental that some people seem 'really' interested and it often turns out that they either might have to have amp surgery themselves or have someone close who has, its strange how some things work out. Its odd though, when I am not wearing the prosthetics and using a wheelchair I do find people smile at me more, also if I am using crutches, people are usually quite nice and considerate, they do smile and will hold doors open for you, etc which they don't usually, does make me chuckle a bit and I do find people interesting. Recently I went into a mobility store to buy a new grab rail, my previous couple of buys have snapped on me and mentioned this to the guy in the shop, on the day I was with my hubby and walking with trousers on, so he turned to him and asked why we were buying it and who for! so hubby indicated towards me, so with that I could see the guy looking me up and down and asked me what I needed it for, so I explained and said I was an amputee, he replied that 'I didn't look like one', I thought it was really patronising as I wondered what he expected and was one of those times I wish I could have thought of good response a bit quicker, as he really annoyed me, anyway he didn't get a sale as he didn't have anything different to what I already had.
  19. ann

    Happy B'day Johnny!

    sorry, only just seen this, many thanks Cheryl and a belated happy birthday to you also JohnnyV.
  20. ann

    Air Legs

    Not vacuum as such Lynne, although they do apparently have a valve which you can pump and alter the pressures. However its unclear whether I will be going down that route now, things have not been going well prosthetically for me this year, this type of prosthesis would be an experiment and I am told a complicated build, so need something I know that works at the moment and something that they know how to make and make quickly.
  21. ann

    Air Legs

    No, not planning to fly off anywhere .... but this type of prosthetic has been suggested to me which might help the current problems I am having with my B/K prosthetics. So am just wondering if anyone else in here has tried anything like this, and if so how well it worked for them. I had it explained that I would have the hard laminate from the knee, half way down the residual, inside that I would have (I think) a full length soft kind of pee-lite liner, over bottom half I would then have a silicone sort of material then a hard laminate but a space between the silicone and laminate where there would be air, the pressure controlled by a valve, supporting the residual and could be adjusted by pumping more or releasing valve. So if anyone has any experience of this type of prosthesis or any thoughts please feel free to mention, as its not something I have come across before. Thanks. Ann
  22. ann

    Able-bodied ignorance....

    LOL Kate, perhaps he just doesn't want a new shower!! I have just been 'project managing' my first ever adaptations to our home to make part of it more wheelchair accessible, its been quite interesting working with different builders and firms trying to get what i wanted and more or less have succeeded in getting it how I needed and wanted it. It never ceases to amaze me what other people 'think' I need and don't realize that what might be helpful to some people with certain disabilities isn't always what is helpful to amputees. I did get in touch with an OT to start off with, because I thought we might be able to get a grant to help with costs (we couldn't), who insisted on checking out the rest of the home too, but I think they did realize I was quite clear on what I wanted done, but found really was only there as sort of admin to give advice on the process of possible grants not to really help on the building side of things, might be different with showers though. Cheryl ..... I too have been using a 'naked leg' this year and get stuff like that all the time, some interesting comments have come from other amps, like 'why is one socket longer than the other' and recently from someone else 'oh you haven't got a proper leg on'.
  23. I think you have been given some good on here Galway, leave the leg off and get it checked out. I too have had some minor infections round the knee area, usually solved by antibiotics and adjustment to socket fit ... but have often have had to have both my knee treated and adjustments made to the socket/knee fit on the prosthesis. If you have to wait a while for a prosthetic appointment might be a good idea to take a pic of it as it is now and show it to the prosthetist, cause it might be healed by the time you go back for an appointment, it might help them understand what caused it, better.
  24. Just wondering if anyone has any ideas on this. Those on here who know me, know I am in the UK and have been a bilateral b/k for many years. My latest pair seemed initially successful but are giving a lot of knee pain on the inside of both knees and in the last few weeks I have been back to the prosthetist/technician on quite a few occassions getting the knees eased out. Initially I was told, they were much higher at the back and sides and these were trimmed and again seemed to improve things initially but then caused problems again. They agree they are tighter, though this is because the last ones were apparently not tight enough. The pain levels kind of build up through the day, quite often worse with sitting and walking after sitting, and is mainly on the insides of both the knees as well as aching later in the day and am also experiencing hip pain which is not usual, sometimes there is some redness on the insides of the knees, I have also noticed on the longer stump that it isn't as warm at the end as it usually is when I take it off, which I have told them about. When I walk with the legs they feel quite stiff and both legs don't seem to respond as I would expect them too on continued walking outside the house,they are definitely not feeling part of me as they usually do, but I am being told there is nothing different. The feet are my usual type. A physio has picked up the hip on one side is doing different things to the other side, though has put this down to lack of muscle in the other side and given me exercises, which I know is the case, though wasn't a problem until I started wearing this new pair of prostheses. The knees are definitely tighter, especially the right knee where I get the most discomfort, initially I couldn't slide my leg straight in the socket but the left side where the leg is more protected by a gel liner the leg seems to go in the socket more easily. The pain goes after a day or so of me switching back to previous prostheses, yet looking at the sockets I can't see a lot of difference. I have had similar to this several years ago and the legs were remade and things were ok with the knees, at that time I also had the knees x-rayed and they showed no problem, so I am pretty sure it is a prosthetic fit problem. Am wondering also if this could be an alignment problem because the pain is practically in the same place on both legs. Just really wondering if any of you folks had experienced similar problems and how they were resolved. I am back again for an emergency appointment this afternoon so if anyone has any ideas would be pleased to hear, am getting to the point of asking for a remake, though this is a second attempt, different prosthetist and we are six months in, so getting a tad concerned.
  25. Thanks for replying Cheryl. The red spots on the inside of the knee were well below the trim lines. The sort of pain I was having was basically a kind of pressure pain in the inside of both knees, but would spread to the whole of the knee and when I tried keep wearing it and pushing through the pain I think they were swelling. Like you say with your sockets, mine have always been flared in the past. The pressure was to the extent where when I was out I really wanted to take the legs off and as soon as I reached the car or home, that was what I was doing. Continual walking was really hard work, much more difficult than usual, they felt very heavy, and neither of the legs felt 'one' with me. In the past if I have had problems like this I have been recast, but this is the second attempt and they didn't recast but used the previous check sockets and they were heated out in the troublesome areas, this seems to be the way they do things nowadays though I am not sure about it myself. Before I took delivery of these final sockets a couple of weeks ago I had three weeks or so at home using reinforced check sockets, I could only wear them in the house but they were supposed to pick up any problems before they made the final socket, in theory that should have worked, I had no problems with the left check socket although a few issues with the right. The final sockets were supposed to be a replica of the check sockets but they turned out a lot tighter and even the prosthetist remarked on it at the time. At the appointment yesterday afternoon, where I saw a different prosthetist, the loading of the socket over the foot was much further forward than expected to be, so that was adjusted and also I was given some more room at the knees. After they'd been adjusted and I walked in them, the longer of the two legs felt more natural, though not the other side, it felt quite different, So I questioned whether they had done something different to the left leg and he explained that he had altered them both the same but that the longer stump would probably need less adjustment, so adjusted the other side and that extra adjustment made them feel more equal. So was advised to take them and give them a good try .... again! So far, it seems ok and the knee pain is lessening again so finger's crossed. I don't think they are particularly 'experimenting' on my socket fit Cheryl, I know what works for me and am nowadays quick to let them know what I know works for me,the trim line was higher and definitely a more snug fit though I don't think was radically different from what I have had before and I am beginning to think this had more to do with the alignment set up perhaps than the socket. The guy I saw yesterday did talk about a different type of socket he would like to try, though he is a locum and not there permanently,and I don't mind experimenting ... 'if' I have something I can fall back for everyday ... whilst having the fitting processes, as you know am bilateral, so not having one or other of the prosthetics to wear means not walking and that makes a very big difference to my everyday life.
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