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ann

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Everything posted by ann

  1. ann

    Possible Revision Surgery

    Hi Shelby, sorry don't know too much about symes, am bilateral b/k ..... personally, if I was pain free, able to walk without the prosthesis, and doing ok in my day to day life there's no way I'd be opting for revision .... I think your two to three month window you are giving yourself to be back to normal might be pushing it a bit, least it would be this side of the pond .... I've chatted to a few people who've had elected B/K surgery and it doesn't always turn out as expected ... there are risks, anaesthetics, infection, etc.etc. not to mention the pain and discomforts. I am a lot older than you, so maybe my age informs my thinking, but wouldn't be risking all that you have for higher heels or perhaps even the opportunity to run. Myself I had revision surgery as a b/k, to keep mobile and it was successful but it was quite a long haul and took about 3 months to get fitted with a prosthesis then months of physio etc. Your age is another factor, I've been using prosthetics since I was younger than you and know it takes its toll on you as you get older, the stump changes also, so if you had a b/k now it could be that by the time you get to my age you could be facing another revision, so going shorter again ... all do-able but I myself wouldn't 'choose' that route. And yes there is great technology out there which seems to make all things possible, but not everyone is able to access that and we are always reliant on socket fit.
  2. ann

    Cosmetics

    I can see why you say that Beth, it probably sounds very weird but to me the silicone cosmesis seemed fake compared with the foam and stocking, lol, people will think I am very strange but think its just what I am used to, and I say to people go with what you are comfortable with. Recently there has been discussions, I say discussions, more like arguments on some forums/FB pages, about cosmesis which have all got a bit unpleasant. Personally I don't want to change anything I have in my set up, I think someone hit the nail on the head when they said they thought there was a difference in how people who'd grown up using prosthetics felt differently about them to people who started using them later, and I think they had a point, I know I very much think of them as 'my legs' (though obviously realize they are prosthetic) and don't really like them changed, not sure if others feel the same way as I do. What did concern me though was that some (NHS) users in the UK now 'cannot' get covers given them, so don't have the choice, which is, I think quite concerning.
  3. ann

    Disability Living Allowance debate

    Me too Lynne .... even us bilaterals who automatically got DLA it seems may not even qualify for PIP ..... it does feel like the Gov do just not want to hear and just want to save money ... though this is shortlived thinking ... because people like me are going to go from being independent to pretty much housebound and dependent. It doesn't bare thinking about, so must admit, like you having been very procactive in highlighting the inadequacy of the scheme, I am now trying not to think about what the outcome may be.
  4. ann

    Neuromas are a pain!

    Just picking up on what Lynne is saying ... a lot of the medical fraternity do all too easily write us off instead of investigating and looking at each issue that might be going on within our stumps .... make sure you get scans etc .... I've had similar recently from a bout of knee pain ... and the conversation went along the lines of 'well you've done well up to now ... but ....arthritis ..... age and preparing myself not to be walking for ever etc etc', could see we were getting to the point of talking about painkillers, my reply was what would you do with a 'non amp coming to you with the same', he said x rays, so I said right send me for those as a start .... as it turned out, it was not my knee's as such but prostheses that needed altering. You can ask to see more than one specialist, even within the NHS system... and nueroma's and spurs can often be addressed... we've just got to get access to the right people who know how to sort these things out properly.
  5. ann

    Neuromas are a pain!

    Hi Sue, nice to see you back again but sorry you are having probs. I have a neuroma mid stump, but most of the time they manage to fit socket around that and a couple of spurs, though do have lost of probs getting sockets made on that side. I had a b/k revision few years back and did keep the knee, though saw a couple of surgeons and one was talking about going above, but as a bilateral, at the time it was a bit of a shock and it scared me silly, the revision was successful though I hadn't realized the damaged extent of the stump under my skin graft which had always been there but I hadn't realized and never been told, so I now see the other surgeons thinking, it does reduce my walking somewhat, though I think going a/k, which I realize might happen at some point for me as a bilateral would complicate things, so for me its all trade off's, but happy keeping my knee and what goes with it at the moment, though things obviously different for you as a single amp. I am glad you are going plastically this time, that's what I did too, as they had to work with existing skin graft, but they did a brilliant job and I was really amazed at the results, things have been much more manageable since, so hope yours goes well too. Good luck on Saturday.
  6. ann

    painkiller side effects

    Hi again Kate, glad the revision surgery went well and you got the pain meds sorted out. Glad you are feeling better in yourself, make the most of this healing time and be good to yourself, give yourself plenty of time to heal.
  7. ann

    Cosmetics

    I am a bit the same Ann ... partly because its what I am used to (we didn't used to get a choice because of the way they were made). It's good that there is choice though and most people can decide what they prefer.
  8. ann

    Cosmetics

    Hi Marcia How much can you afford? I have seen a very lifelike one at a private company here in the UK .... I think probably the type HM herself uses. It was some years back I saw it and can't remember the price, but it was expensive ... pretty good though. Myself I have gone back to the foam and stocking cover ... its pretty functional and what I am used to. Did try the (NHS) silicone covers for a short time, but didn't like them that much, I thought they made the prostheses slightly heavier, which I didn't need (seeing as I am trying to lose weight), I also ended up covering them with stockings anyway as they stuck to clothes a bit ... apart from that cosmetically it looked ok, it just wasn't that practical for me. Ann
  9. Hi Joe Nice to hear from you and glad you are doing ok. I am so glad you have mentioned the static electricity thing, because I am getting static shocks all the time at the moment, particularly off my new legs (b/k's) .... am wondering if they are using different materials or whatever, as I never used to get this, but now am getting it all the time, every time I take the legs off, also from the car, shopping trolleys etc. etc. is anyone else noticing this? Ann
  10. Well done on the 10 years Johnny and everyone else who have an anniversary coming up. Its my 42nd anniversary later this week and I've just discovered its the same day as the Titanic went down. Ha ha. Though slightly less years!
  11. ann

    painkiller side effects

    Hi Kate .... only just picked up this thread, but I live in the UK also, so know the difficulties, particularly regards changing doctors, hospitals, prosthetic services, etc., and depending on your situation, know its not always easy to do this, over here in the UK we can't just switch doctors or hospitals, we usually have to apply to our local PCT's for funding to go elsewhere ... and although do-able, it can take some time and because of the 'system' we sometimes find ourselves in a similar position to where we were before, so sometimes its better to try and work with the people you are with ..... it depends on the situation ......but I think these days everyone has to take as much control of their own well-being as possible and keep mentally on top of the services they are receiving ... which are not always that well organized, I find. I have been an amputee for many years and I have had heard such a lot of mis-information, particularly around pain, what can and can't be done etc., The trouble over here is the way treatment/services for Amputees is organized, and the way its been thought of and budgeted for, its very much a post-code lottery and my own experiences have shown me that local services do not always know or have the experience to treat us and its quite difficult to get access to the specialist treatment available in some places ... mainly because there is often no specialist referral route... hopefully things are beginning to change, we are hearing more nowadays about amputees, prosthetics etc., and it is now becoming more mainstream. Good luck with the revision surgery on Wednesday, I am guessing that the stump itself is adding to the pain levels at the moment and possibly the reason why you are having the revision, so maybe a good opportunity to get them to review your situation ... have you talked to them about the kind of pain relief they will use during the op and after .... are they using an epidural .... and might they be able to swop or cut down on,what you are currently taking for something you can manage yourself better, and cut down on, once your pain levels decrease after the op .... also possibly the type of prosthesis you use after your surgery .... use the healing time to gather as much info as you can! Good luck Wednesday and hope things are better for you after this surgery.
  12. This really for all amps in the UK who are concerned about the future of NHS prosthetic service provision http://www.limbless-association.org/2012/02/13/murrison-review-your-opportunity-to-comment/ so if you are able to get along to the meeting then that would be brilliant, but if like me, you are unable to attend, would urge you all to email the Project Manager on 01249 468228 or email him at richard.seymour@awp.nhs.uk with your views or comments ahead of the meeting.
  13. Just to let everyone who is sending in comments know that I sent mine in yesterday after telephoning and was advised to send the comments to the email given, I was advised they were on leave but accessing emails. This morning I have received an out of office reply saying that the said person is out of the office and to send anything important, including that related to the said meeting should be sent to rosie.howarth@awp.nhs.uk so if you have already sent you might want to re-send to this second email address. They are not making it easy for us are they?
  14. What Neal says about 'tightness' could be an issue with a graft, I tend to like my sockets with extra sock room, anything tight especially on the grafted side will aggravate the skin, as my skin graft doesn't 'give' in the same way my normal skin does ... but having said that I have been living and more importantly walking with prosthetics (most of the time)with a skin graft for over forty years, so it is all do-able, one way or other. What works for me at the moment is an ordinary PTB with soft bottomed Alpha liner, I do sometimes have problems but its more often to do with the socket not fitting right, or sweating, it also has its disadvantages such as 'bulk' behind the knee which limits the knee bending, but for me that's not too big a trade-off, and keeps me walking b/k. Apologies about spelling, as was sending other posting from phone.
  15. Hi Gwen ....i am also b k and have a skin graft so know the issues. I suppose yr options really depend on the size and position of your graft and what you have tried already. I spent many yrs using a no 8 type leg with thigh corset as stump cld not tolerate any pressure my graft was on the front, underneath and part way at back of stump. But about 3 yrs ago i had a revision and reconstruction and now just really have grafting on the front and now wear a regular PTB type with a quite thick Alpha liner wch works well. I tried both pin and harmony previous to the revision, neitherworked for me at the time, but i know the pin can pull on the end of the stump whichfor me isthe area my graft meets the reconstriucted bit so personally wld pass on that, the harmony also puts pressure on the entire stump and though i know ppl who love it, there is a lot of pressure from the suction which seems to make the stmp appear more reduced, so again for me personally, another option i wld pass on. Your situation cld be entirely different from mine though Gwen and you need to find out what works for you. Make sure you check what areas you will be taking weight on, possible friction areas, prob most importantly material of the liner you will use as some materials are kinder to the skin than others. Wish you well with it all.
  16. ann

    Disability Living Allowance debate

    Mick, if u know people playing rugby and regularly climbing mountains or whatever with motability cars, perhaps u should be having a word with someone....this is what the public are being asked to do. And even i am questioning how ppl are able take part in activities like these and still qualify for the higher rate of motabiliy.
  17. ann

    Disability Living Allowance debate

    Hi Cheryl wasn’t going to write anymore on this subject but seeing as I been mentioned by name I think I will………where to start . I basically agree with most that has been written, (bit of a surprise eh!) but if I may I would like to take this slightly further with a bit more background info that you might or might not know. We in Britain have what’s known as the welfare state, I believe its origins started in earnest at the end of the Second World War. Where a basic frame work was laid down, over the years there have been lots and lots of stuff added to it. (This is very basic) it has been tweaked, altered and basically grown into the system that we enjoy to day. It basically covers every thing from your birth to your death. I.e. payments for child benefit , school meals, uniforms , higher education , unemployment , health care , dentist , housing , job seeking basically any benefits the list is endless over the years there has been so much added to it and various layers it would take a very very smart person months just to sit down and go over every thing . It has of course been messed around with by every party that’s came into power and even the most simple benefit has layers upon layers of paperwork and red tape added to it. Making it a very good but very hard system to find you way around. it goes without saying over the years it has grown and grown in its cost to the country and, in the past no political party would seriously try to alter it because of the public outrage so it has grown into something that this country can not afford to keep paying (many will disagree with that statement) but it was deemed political suicide to mess with it. However that all changed rather suddenly when the banks crashed and the S..T hit the fan , add to the mix a hung parliament where two parties joined together to try to form a government . One of the first things this government set out to do was reduce it outgoing costs targeting amounts many other things the welfare state. It goes without saying as soon as these cuts where announced all the major players starting getting sorted by lobbying there mp”s fighting there corner to protect there particular benefit, throw into the mix a bit of propaganda (like they are shining examples of humanity) from the press about anyone one benefits is living the high life ect things are looking down. This now brings us to this thread. As you have read DLA is made up out of two parts living allowance and mobilility Each having different levels attached to it. You can get both or either and depending on what level you get depend on the amount of money you get. I am not going to say anything more about DLA as it is a very difficult subject however I am going to say a few things about the mobility side of this benefit , it is open to and is abused despite what other members say , With your say so Cheryl (you can always delete this post) I will go on and say why. I won’t go into what you need or don’t need to qualify for this (look for yourself via goggle) But even in my local town , you cant walk down the shopping hall without being accosted by people asking you very direct questions , starting with the have you had an accident in the last few years , as soon as you say yes to any question they will Wisk you away and start the clams process (naturally there is a fee involved but hey you could get lots of money out of this ) they will do all the paperwork , they will also do a benefit check for you and again if there is a slightest chance of any money they will (for a fee) chase the clam up and most importantly do the all important paperwork . And it goes without saying they know exactly what wording to use. In my circle of friends/workmates ECT there are over ten people using mobility cars, out of that ten I have to be honest and say at least five shouldn’t have them. Now if I know five what’s the % with the rest of the population? Which makes me ask the question are these figures quoted correct, we all know how easy it is to make the figures say what you want them to and believe me any government body is even worse. Now before anyone jumps one and states that I don’t know these people or there circumstances, I have to say that I do very well. Some examples I traveled over to the lakes last year twice in a mobility car with the person concerned and climbed up Skiddaw Mountain one week and Blencathra the following week (not bad for a person with mobility problems eh) Another one plays rugby every week I could go on and on but I have gone off the subject now. So Basically Cheryl that’s my take on this subject , I don’t have any faith that the new system PIP will be any better when it comes in, it is a cost cutting exercise nothing more nothing less. I also think that people who abuse the system will still abuse it and nothing I write on here will change that .even with my negative attitude towards the benefits. Not sure how using this forum at work fits in with PIP ! You did ask Cheryl.
  18. ann

    Swimming fins

    Hi Jane, I am sure there was someone else on this forum who used these fins and posted about them a few years back, though I did a quick search and couldn't find anything, but I do remember it. Sorry Mick I didn't understand your problem with your stump and your hip in the water, I am bilateral so obviously have to use the amputated stumps if am swimming, though don't actually swim very much these days as not a particularly good swimmer, but have swum without this problem and have recently been advised to think about swimming.
  19. ann

    Disability Living Allowance debate

    From memory Cheryl, disability living allowance was introduced in the late 1970/80's to help people with disabilities with the additional costs of living with a disability. It is currently broken down, I think, into levels of lower, medium and higher rate of the mobility component and living component, and people are assessed and awarded the allowance depending on the severity of their condition, which could be any condition eg a physical condition, chronic or terminal illness, learning diffs, mental health probs etc. etc. People are usually assessed for this, but more recently certain conditions that are not likely to improve as in the case of people with more than one limb missing have been awarded the higher rate of the mobility component of DLA automatically. This also gave people access to other things such as Blue Badges for parking in disability bays, and access to Motability, a government sponsored charity which allows people on higher rate DLA to lease (through their allowance and a deposit) cars, mobility scooters, etc. etc., also helps with adaptations etc. However as you prob are aware, over here there are massive public spending cuts and welfare/benefit cuts happening, and they are reforming welfare and as part of this Disability Living Allowance is being replaced by Personal Independence Payments http://www.disabilityalliance.org/f60.htm and those with the conditions that automatically gave them access to the previous DLA will not have this under PIP. The Government are saying that the new assessment strategies will route out fraudulent claimers etc and be better for the people who need it, however, this not really being believed as we know the government are wanting to reduce spending, this is already happening in many areas of public services, added to this are rumours about the company contracted to carry out the assessments etc. etc., and already we are hearing about people with quite severe disabilities not being assessed properly, allowances being cut etc. etc. I probably haven't explained that well, so I am sure someone will come back with a better explanation, but it is quite a big issue over here at the moment. I
  20. ann

    Disability Living Allowance debate

    Everyone is entitled to their own opinions OBL and I was just talking about my own appreciation for it, I can tell you though as a bilateral amputee, at this point in my life, my everyday living is very much affected by my condition.
  21. ann

    Disability Living Allowance debate

    Sorry Lizzie, I've only just picked up on this on here, but as you know I am extremely concerned about this and have been active writing letters and speaking to my MP. I can only say that for me, as a bilateral amputee of quite a few years, I am tremendously appreciative of DLA. To those in Government who are trying to axe this allowance, I would tell them that personally DLA has allowed me to keep my independence, to independently look after my family and be a hands on mum, I know without this life would have been very different for the whole family, I understand this allowance was brought in to help people with the extra costs of living with a disability, and would say to anyone who doesn't realize, having a disability does make you very high maintenance and those extra costs re-bound on the whole family. At the weekend I heard IDS saying that they were cutting benefits to make people more independent, this really doesn't add up in the case of DLA particularly for complex amputees. As Grum says, its the extra help that DLA brings, like access to Blue Badges which make parking easier and less costly (we usually don't have the choice of being able to take public transport, or walk) and of course Motability, accessible cars and their help with adaptations to cars which in the UK we are required to have. Not to mention help from other components of DLA which some people are able to access to help with daily living costs. However active we try to be, just being an amputee does take its toll and as I am now realizing does catch up on us earlier than would be the norm for others and now find in order to keep stable I have to very much juggle what I do and what I don't do, its quite a balancing act and not always easy but something I don't think I'd be managing so well without DLA. I also feel very sorry that in the future people in a similar position to me might be denied this opportunity to live as independently as I have.
  22. ann

    Pinching and blisters

    I had something like this occur with a thicker liner on the front of one of my stumps, I don't really think it was the liner because I wear the same type on the other leg and I have never had this occur. I had quite a bit sort of oval shaped area which looked like it was an abrasion or a red sort of raised bruise, it was quite painful to walk on and took several days to disappear even when I had stopped wearing the leg. My thinking is that mine was either the prosthesis, which was new, not fitting me correctly, or the liner not fitting my leg properly. I gave up with it in the end, as giving me more room on that spot didn't help and they just couldn't seem to address it, so have gone back to socks on that side.
  23. Hi Jane Very sorry to hear about your mum. Like Cheryl am a b/k myself, though bilateral so use my arms a lot when moving & balancing etc., but have had my share of strained quad muscles over the years and have found the only real way to heal them was to rest up, sometimes I will use crutches and sometimes give up on the walking and use the wheelchair. Am realizing that stress plays a big part in how we are, maybe thats why also get problems when they are least wanted. Good luck with it all, my thoughts are with you. Ann
  24. Just wondering if anyone else has experienced the problem I currently have with one of my legs because in 40 odd years of wearing of them haven't experienced this before. Have developed problems towards the back of the knee, quite lowish down on the inside, its very tender to the touch and can't wear the leg at all at the moment. Its not a burser as I have those before but for the last few weeks have been wearing a new prosthesis so am hoping its just soft tissue, bruising or the like. Any ideas, would be pleased to hear.
  25. ann

    Below knee problems

    i would bet its the new leg. whenever i gotten a new leg, the adjustment period can be frustrating (and with pain!) but its always worked out. be patient and just keep going back. sounds like too much pressure on that area. good luck Yes I think so too Sue. I had it adjusted last week, but knee swollen so for a few days couldn't wear anything, its settling down now and have worn it a bit over christmas but when I put full weight through it cuts in around the back so I think I may need the trimline cut a bit a lower.
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