Jump to content
Heather Mills - Amputee Forum

Leaderboard


Popular Content

Showing content with the highest reputation since 07/05/2015 in all areas

  1. 5 points
    Hi desperatewalker! OK well let me start off by saying your not alone. With that you may draw the inference this means there is very very limited funds that centers draw upon for prosthetics and their ultimate provision. To be able to grasp what your issue is could you tell us your amputation type, how long have you been an amputee, what is your current provision, your level of mobility or capability and finally which DSC you attend . Off the bat I can tell you from personal experience that if you can demonstrate levels of capability, need and beneficial results from provision , the there are numerous limbs the NHS can provide to assist in helping you fulfill your potential. If you are ultimately looking for that shiny plug in kit lime the ex military lads get via the NHS then your likely to be wasting your time. Unfortunately there is a real two tier prosthetics provision system in our NHS where ex military ( using redirected public funds from the NHS - into a special funding scheme for ex military only) not only get fastracked access to NHS specialist center treatment but are also given exclusive access to prosthetic componentry that civilian users are not considered for and unable to be provided with. Disgusting and unfair YES of course it is- limb loss is traumatic and devastating regardless of how we end up with it. Many of us do not get the chance to choose a scenario where that risk is increased or demolished - ex military to some extent had the opportunity not to sign up and thus reduce their exposure to such risks - I'm sure most of us civies would love to of had a chance to do something to help avoid our limbloss. Anyway that's a whole nest of hornets for another post and day!!! So let me know about the things I mentioned and we'll take it from there- I'm sure I can help you see it from a rational perspective and realistic viewpoint. One last thing - being the NHS be prepared for the long haul and to jump through the proverbial hoops to get the stuff you need. Do you also have any underlying conditions that caused or contributed to your amputation or are you otherwise fit and well? Hope I've helped a bit and I'll do what I can to steer you in the right direction .
  2. 2 points
    Hi Everyone, I hope you're all doing well. I truly appreciate the well wishes. It means so much. Things are slowly but surely getting back to normal around here, which is good - Being busy makes it easier. Lauren is now back at school. It's amazing that just a year ago, we were so unsure of how she'd do, but now, one year later, she's excelling. She was very excited to get back to her friends and her routine, and since she took summer classes, she's back up to pace with her peers. She continues to have 24/7 help at school, which is so helpful for her, even as she has become more independent. After my mother's passing, Lauren spent a lot of time with us and her sister, and just spent time relaxing. I think she needed it, and she seemed energized as we left her back at school. I know that she's going to have a great year! She continues to make strides physically, as her phantom pain has gotten a lot better, and as her feet and legs have gotten stronger. I know that Lauren still misses the way things were, but she's so good at just continuing to adapt. The hot, humid weather in NY (and now back at school) has made it tough for her to wear her cosmetic arms, so she has been going without them, which I think has made her a bit more comfortable in her own skin. Every day, it gets easier it seems. I hope everyone has a great long weekend... And thanks again for all of the support. Best, Marion
  3. 2 points
    Hey cobber.............. Just updating as well...........
  4. 2 points
    Hi Please tell everyone you know about the new beginner's cycling book for amputees coming out soon. Visit www.stumpsandcranks.co.uk to register your interest. It really is the best fun on less than four wheels that you could ever have! Thanks...
  5. 1 point
    Hi everyone, I just joined the group and am really impressed with how supportive and informative everyone is. I'm hoping that you can provide some insight into your experiences and help me make this crappy decision about what to do with my pesky ankle. Just as background, I was involved in a motorbike versus mini bus incident.....unfortunately the motorbike didn't win and neither did I. I broke my pelvis, femur, fingers and my right ankle was partially ripped off. There was an open dislocation of the ankle joint and my gracilis muscle and a skin graft was used as a muscle flap to try and reconstruct my foot. That was 3.5 years ago and obviously in that time I have undergone many surgeries, tried every type of pain killer, been through endless hours of physio and rehab and experienced the complete rainbow of emotions that comes with a major trauma injury and the eventual realization that its not going to get better (I'm sure you all understand what I mean). I could talk a lot about what I have been through, but it is all history and what I really need advice on is where I am physically at now, and how to make sure that I can get the best out of my future. I have been left with a not-so-gorgeous foot that I jokingly call my lawnmower foot (because it looks like it got stuck in a lawnmower), and while I couldn't care less about how it looks, I am bothered by pain and limited functionality. I have a limited range of movement in my ankle, but it is finally stable after my most recent surgery. I have been told by my surgeon that there are no other surgical options available to me - there is no point fusing my ankle because it is already stable and it probably wouldn't help my pain because there is clearly a lot of nerve damage. He said that because my ankle is stable, theoretically we just need to get my pain under control and has referred me to a pain specialist. He acknowledges that amputation is an option, but he is an orthopedic surgeon and is very much against the idea. So for the last few months I have been trialing different sorts of pain medication and been seeing a pain psychologist with very limited success. In my mind, I have been preparing to lose my foot for quite a long time and I am just making sure I go through all of the necessary steps to ensure that I have tried EVERYTHING and I wont have any regrets if I make the decision to have an elective BKA. MY PAIN LEVELS AND WHAT I CAN DO (with painkillers and with intermittent rest and elevation) I can walk on it for up to approximately a maximum of 3km per day before I turn into a weeping angry hot mess - that is a max of 3km TOTAL, including showers, bathroom, getting around the house and trying to go to work. And I sort of walk like Phoebe from that episode of Friends where she runs through Central Park with her arms waving about like a crazy woman. Realistically, I walked a total of 3km on Wednesday last week, and I was pretty limited in what I could do on Thursday because my ankle was so sore - but I can do it if I have to. When my foot is elevated I am really not in any pain at all. I could easily get away with no painkillers if I just stayed home and lay around all day. When I hobble short distances to the bathroom the pain is pretty minimal, but walking with no shoes is quite difficult because of the range of motion in my ankle and my clawed toes. I can wear sneakers and walk for a while with a pretty minimal limp. When my friends see me they scream with excitement because I can now walk into a room (slowly) without my crutches, its hard to explain why I would consider something like this. I have met a few people recently who had no idea that I have this injury because I was normally standing and sitting at a bar and I walked normally to the bathroom and to get a drink. At the end of the night they noticed I started limping and asked what was wrong with my leg. I can ride a bike with minimal pain for about 1 hour - most of the pain is associated with weight-bearing when I walk. After an hour of cycling the joint is getting pretty angry and my partner will probably have to help me walk back inside or carry me. I go to a weights/boxing circuit class several times a week and keep fit in the gym. I cant do many of the exercises in the circuit class, but I modify the exercises and do what I can to keep fit. I think regardless of whether I keep or lose the lawnmower foot, I need to be as physically and mentally as strong as possible. I am on this crazy rollercoaster where I wake up every morning and think "WOW, the pain isn't that bad, I could probably live with this, its finally turned a corner and I'm improving" and I feel hopeful, but then as the day progresses I just cant imagine living like this forever. Every morning I think WOW.......and every afternoon I feel crushed again - I feel this rollercoaster even though I know my foot isn't going to get better, and my best time in the morning will probably only get worse over time. I have been in immense pain and in a wheelchair and on crutches for 3.5 years - getting my body to a point where I can go for a walk every night is INCREDIBLE, it has been a long road and a lot of hard work to get here. I still want to cry with gratefulness every time I hold my partners hand and we walk along like a normal couple (because I don't have crutches anymore), and I cant explain how amazing it feels to go for a walk by myself, unassisted, independent - its just incredible. And although my foot hurts, its NOTHING compared to the agony of the combination of my injuries after my accident. I think the novelty of being in so much less pain and being so mobile after so long is making this decision so much harder. I just learnt how to walk again and now I want to chop my leg off?? Whaaaaaat????? I have read a lot of blogs, books, articles, seen a surgeon, spoken to amputees and tried to get as much information as I possibly can in order to ensure I make the best decision for me. have read lots of other FAQs that amputees have answered that talk about the actual operation and day to day living. Although I don't know what being amputee is like of course - I think I understand the general concerns and the risk that amputation wont give me a pain free life. Of course I worry about the usual things like getting to the bathroom in the middle of the night, swimming, sweating, surgery complications etc. But I think those issues are part of getting on with life and you just deal with them because you are an amputee and that is part of it. I'm worried that the combination of all of those issues will out-weigh the benefit of chopping off the stupid lawnmower foot. Funnily enough, I don't have any questions in my head about if I will still be able to do various activities. I am very clear that I have already lost my old foot. I know I wont run or snowboard again if I keep lawnmower foot. If I ever do that stuff again it will be through a lot of hard work and determination and probably with a prosthetic. But is living with a prosthetic worth being able to do that? Most other amputees that I have spoken to cant walk at all, or they have some sort of severe trauma/disease/deformity that really takes the decision out of their hands - but I can actually walk!! I think if I was 70 years old I would keep this foot and just take heaps of drugs to get through my day. But I am not, I am a healthy 34 year old female who loved the outdoors, running, snowboarding, dancing and LIVING. I hate taking painkillers. I hate that my partner does so much for me. Right now, if I could make the decision now it would be to amputate TOMORROW because I feel grateful that my injury was to my foot and not a spinal or brain injury - I have a second chance to remove my foot and get on with my life. My accident really taught me to be grateful for every day. At the moment I watch an ad on TV that shows an amputee running and I am so intensely ..... jealous?? I never thought I would be jealous of someone who has been through a horrible experience, but I really am. Just gut wrenchingly jealous every time I see the ad. I want that chance so badly. But maybe I should just be grateful I can walk with my own foot!!!! I guess I just wanted to know if there are any elective amputees out there who had to make this decision even though they could walk before the operation. I just have never spoken to anyone that had to make the decision to amputate even though they could walk with their own foot before the operation, and if they regretted it. How mobile were you?? Or any other considerations I should be aware of that they only now know because they have been through the operation? QUESTIONS: 1. If you could walk 3km in a day on a lot of painkillers, would you choose to keep your leg??? 2. With the benefit of hindsight based on what you know now about being an amputee, what level of pain and mobility would you put up with to keep your leg? 3. What would your pain score out of 10 be for you to keep your old leg? 4. What would you do??? Please feel free to be honest and say what you would do if you were in my position. I would never base my decision on what anyone else says they would do and I have been speaking to support groups, surgeons, amputees and anyone I can find who will talk to me for months....I'm gathering all the information that I can and will not base my decision on anyone's personal experiences or opinions. I am just curious what other people would do or have done. Sorry this is a long post - I just wanted to be clear about where I am at physically and why I am struggling with this decision mentally. Thanks for your responses. Aimz
  6. 1 point
    A friend of mine said I should write up an article with all the things I use to help me ride and something about myself tp put it in perspective and this is the result. I hope you find it useful and please feel free to either post or email me comments good or bad :) Enjoy. --------------------------------------------------- An Amputee and a Mountain Bike January 06 I had an operation on my ankle to lengthen every tendon to allow me to put my foot flat on the floor, this was a left over from a large accident I had in 1983 which left me as a RBK amputee and my left leg having loss of muscle and joint movement. After a second operation to treat the arthritis in the ankle and lots of physio it was time to sort my fitness out. I started at Redbridge Sport and Leisure Centre as the people where great and it was fully accessible, after 4 months I was talking to a friend at work about getting fit and he said “why not get a mountain bike, you love the countryside?” I laughed thinking to myself yea right like I could do that..... But it had started me thinking, perhaps I could, I used an exercise bike at the gym.....hmm maybe. I bought my mountain bike a month later with no idea what I was actually getting but luckily enough was steered very well by the shop I bought it from. The first ride wasn’t very interesting consisting of a ride up the road to the local park once around and back home (about 1.5 miles) I was tired out and very sore, but buzzing from the feeling of freedom. That ride immediately showed I needed to make some changes as the back of my knee where the socket had dug in was a nice red sore mess. I needed something to stop the need to bend the knee to much, lots of internet searching later this turned up. This helped massively and solved the problem almost totally although has it’s own drawbacks as we’ll see soon. I’d also been trying different ways of keeping my feet on the pedals especially the prosthetic one. I tried normal pedals...bad, toe clips which where ok till you needed to stop and get the tin leg out quick then I ended up on the floor then a suggestion from a mtb forum was to get some GOOD quality flat pedals and a pair of 5:10 Impact mtb boots. WOW what a difference, the soles of the 5:10’s are made from the same rubber as rock climbing shoes and they stick like a limpet, problem solved. For a good 3-4 months I was a happy bunny going further and further around the park then venturing to Hainault forest which had........HILLS, this is when you find out how unfit you are again after all that time on the flat. During this period I’d signed up and been chatting on a cycling forum (www.uk-mtb.com) and the guys on there had been and still are incredibly helpful and supportive, a group of them went every weekend to another nearby forest called Thorndon Country park and after lots of prodding and cajoling finally got me to join them. They kept to a much easier route than they normally did and also kept the pace down but boy oh boy was it hard work especially as it was deep winter and the mud was 6-8inches deep in places and I’d never been off the fire roads before. I didn’t do bad but it showed up two things. The first I still wasn’t anywhere near as fit as I thought I was and the swing crank once you get properly off-road was hitting every root and rock and making going extremely hard, also because of the way it works you lose power on that leg as well. I bowed out halfway round finding the going very hard but more due to being totally exhausted, finding my way back was interesting going the wrong way at one point and finding myself face to face with a 25 foot deep V gully covered in mud and roots, I cycled down then got off and proceeded to spend a good 10 minutes getting up the other side then sliding all the way back down in the mud and finally getting up by holding onto a fence and pulling myself and the bike up an inch at a time. By the time I got back to the car I was so past exhausted it wasn’t funny and covered head to toe in thick mud, but DAMN had I enjoyed myself or what. This was the start of a slippery slope I’m still on. The realisation dawned that I needed to take the swing crank off if I wanted to get off-road to any great extent so one afternoon took the bull by the horns, well my spare leg anyway and took a saw to it. I cut it 4 inches shorter and also cut out the back of the socket with a Dremel to allow the knee to bend further and the various tendons in the area to work unhindered. It was amazing, so much more comfortable and quite a bit more power as well. This was what I ended up with Needless to say my prosthetist Laura was none to happy and I got a good tongue lashing, but now months down the line the legs been lengthened back to normal with some other tweaks being made and we’re both happy The next month was great fun out and about all the time in the mud and rain but two big issues I still had where getting up hills and getting off the bike. Hills, the problems here is power and the ability to stand and pedal. With the pedals in the 6/12 position the only way to move forward is to push with one knee and pull with the other till the pedals are in 1/7 then you put your weight into it. For a BK it’s very hard to do this and for an AK impossible on one side so on anything slightly steep I would just run out of steam without the ability to stand and power up the last section. Off I go back to the internet hunting for a solution and finally found the Rotor. This is geared so the power pedal is always in the 1 position when the other pedal is at 6, this allows you to always be putting power into a stroke. After this was fitted the difference was amazing, I could now get up hills I previously walked and could stand and pedal for short periods allowing me to get over tough obstacles. In all honesty this one item has made more difference to my cycling than anything else and is the one thing I would NOT give up even if I had to give everything else away. Ok, getting off and on the bike how hard is that? Well on the road or in the park it’s not, but once you start getting to do off-road area’s no matter easy they look it becomes a problem. If you have the seat adjusted as it should be it’s quite hard for an amputee as you can’t point the toes on the prosthetic leg to keep in contact with the pedals, this gets really stupid if you on an off camber slope. I mentioned this on the uk-mtb forum and said wouldn’t it be great if someone made a seat post that went up and down so I could click a button before stopping and the seat would drop. The immediate responce was “have you looked at the Gravity Dropper?” Well blow me down its exactly what the doctor ordered. Short time later it was installed, solved the problem totally and has been superb ever since. Roll forward 6-8 months and I’m out 2-4 times a week doing things I’d never have thought I could of over distances I could of only dreamed about and loving every damn minute of it, well apart from the huge muddy puddles full of horse poo, as it tastes awful. Now before I end with a list of all the bits I’ve found useful I’d like to thank a few special people who’ve helped me greatly. Trent, for always pushing me but knowing when not to Luke and Tony at Triton Cycles (http://www.tritoncycles.co.uk/), for putting up with my constant upgrades and being a really great couple of blokes always willing to help www.uk-mtb.com, to many people to mention who all helped me get going with support, suggestions and endless patience with my noobie questions Laura, my prosthetist who’s always patient, understanding and doesn’t mind trying something a little different. Hope you found this useful and please if you have any comments or suggestions drop me an email rikk@golum.co.uk ............Rikk Flat Pedals Something like these that are large and have a lot of pins to dig into the sole. 5:10 Impacts http://www.stif.co.uk/shop/mb_software_pro...ten&cat=211 http://www.fiveten.com/ Swing Crank http://www.highpath.co.uk/cycles/special/index.html Rotor UK Supplier http://www.velotechservices.co.uk/rotors.htm Manufacturer (lot more info here) http://www.rotorbike.com/2006/rotorgen.htm Gravity Dropper http://www.gravitydropper.com/ Pump Having to pump a tyre up on the trail can be a pain as we’re not very good at crouching so take a peek at this pump :- You basically stand on it and pull the rope handle like starting an outboard motor, pumps very quickly and no need to crouch or sit on the floor as you’d do with a normal mini pump  http://www.cyclaire.com/bikepump.html Ergon Grips The grips they do are fantastic for stopping numbness and tingling in the hands/fingers and as most of us use either crutches or a stick at times it affects us more. http://www.ergon-bike.com/en/grips/index.html Lifeventure Towels These little things are superb, pack down really tiny but absorb so much sweat and dry out in no time at all. I always carry one on the bike and stop for a dry off every 40-60 mins and finds it helps massively. You can pick these up in most hiking/outdoors shops like Milletts. http://www.lifeventure.co.uk/htm/washgear/...ibre-towels.htm X-Static Liner Liner These are liners that go in between your stump and the normal silicon liner, they soak up sweat and stop rashes/infections/smells due to the sweat. I used to stop every 30-60 mins depending how hot it was to dry off, now most of the time using these I either don’t stop or at most have one change halfway through. They are so much more comfortable and my stump dosn’t look like you fingers do when they have been in the bath for an hour anymore  Apart from the Rotor these have made the biggest impact on my cycling since I got them recently. http://www.kingsleymfg.com/KMFGStore/Catal...mp;advmode=True UK Supplier. CHANECO® Chris Hanley & Partners 4 Kilvey Road Brackmills Northampton, NN4 7BQ United Kingdom Tel: 01604-709999 Fax: 01604-700057 Dermasalve Great general purpose cream for the end of the day, very refreshing and soothing. http://www.pharmacy2u.co.uk/ Sheabutter This stuff is the dogs and I’ve not found any better moisturizer, a friend’s wife told me about this as it’s the base ingredient in every expensive moisturizer but unrefined it’s all natural with nothing extra. The stuff lasts for ages, a must try and even if you don’t like it give it to the wife she’ll love it  http://www.sheabuttercottage.co.uk/ Bodyglide This is a lubricant/protectorant for the body, idea is you get a sore spot/blister you pop this on and it stops the chaffing in the area, not had a chance to try it as since moving to suspension liners I’ve not had any. http://www.wiggle.co.uk/ProductSearchAdvan...e&cat=cycle Adaptskin Only just started trying this. Specifically for amputees, check the site out. https://www.adaptlabs.com/adaptskin.htm And lastly for anyone who’s interested my injuries where :- Left tib/fib compound fracture Left Femur compound fracture Left hip 1/3 of ball broken off 30% muscle loss on left side due to injuries Right below knee amp Right femur fractured Punctured lung For 20+ years I’d been walking on tip toe due to the muscles and tendons in my left foot shrinking till the operation mentioned at the start.
  7. 1 point
    I was looking through on your website and came across your contact info. I read that because of so many letter's and short staff that not all letter's would be read. But I decided to go a head and write a letter to you anyways, and it would be self healing for myself since my amputation was so tramatic. I was so surprised when I received an email and a phone call from one of your people. I never thought this would happen. It was very heart warming to know that someone does care about the pain I am living everyday. For the first time in almost 3 years I feel that there is hope for me and that I might be able to get my life back again!! It's been a very difficult few years for me, but I now have hope!! Thank you so much for everything you do for people, and for your website because without it I wouldn't have learned the things I have or to have been able to talk to people, even becoming friends with some. It is very much appreciated! Mary Farquhar
  8. 1 point
    Finally, a tiny bit of publicity....such a shame it wasn't picked up by the other media and given more prominence.
  9. 1 point
    Hello! I am a new member in this forum since yesterday. I became a bilateral amputee (right, below knee; left, hip-disarticulated) after a traumatic traffic accident in 2012 at age 46. I got my below the knee prosthesis while in rehab about 4 months after the accident. I had to have a few reconstructive surgeries and it had required a lengthy healing period, before I could finally be fitted for an HD prosthesis in the beginning of this year. I have gone (and I am still going) through all the ups and downs of a long recovery journey any amputee could possibly ever face. Like some of you on this site had been looking for the right support group which I was never able to find. I had a look at the website www.hphdhelp.org which has not recently been updated. I couldn't find any group on Facebook that really addressed the needs and issues of high level amputees. So I decided two weeks ago to found a group for hip disarticulation and hemipelvectomy amputees ONLY. Initially, I thought about a small group of max. 15 members, as we are so rare. The more surprised I have been, that the group has already 39 members, all HD or HP amputees, with the exception of a few prosthetists. Someone in this forum mentioned Dr. Christina Skoski, the founder of the hphdhelp.org site. She now is a member in my newly founded group as well as a few other members from the hphdhelp site. My group is accessible through Facebook. I made it a closed group for the protection and safety of the members. Therefore, the content can only be seen by members. I am so pleased to see how many people contribute with tips, advice and sharing their stories. I feel so honoured to have two renowned prosthetists in the group, Tony van der Waarde from BC, Canada, and John Hattingh from VA, USA. Whoever is interested to have a look at it, please send me a request through my group site on Facebook. The group is called "High Level Amputee Support Group".
  10. 1 point
    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
  11. 1 point
    I'd recommend exhausting all reasonable options. You've been referred to a pain specialist, but not all pain specialists are alike. If you're getting meds and psychological treatment without adequate results, you might benefit from an *interventional* pain specialist, who might be able to dramatically improve pain with nerve blocks, perhaps. He'd at least be a second opinion on your pain regimen, which you really should have before an amputation. I hope you've had at least a trial of TENS. You might benefit from topical capsaicin gel, which is over the counter. Pain can usually be resolved without amputation, one way or another.
  12. 1 point
    Well heelllooo stranger! It's great to hear from you, Cat...I was literally just wondering about what you and Ruth were up to last week! It sounds like you're definitely keeping busy, but do try and poke your head in here once in awhile, as we're certainly in need of some "livening up" around this place! It was probably the upcoming conference that got me thinking about you...I managed to miss the one year you were able to attend, but I am going this year and it sounds like it's going to be a fine time. Of course, like me attending whenever the ACA conference comes to the western U.S., I'm sure that an Aussie event is much easier for you! Take care!
  13. 1 point
    I have not been on here for quite a long time but have some good news on new technology that I am now using If you haven't heard of the EMS socket system, you will soon. I was the 2nd to receive this new inner socketry. First being a 40 year amputee BK and me being a 5 year amputee AK. Think of a golf ball and envision what the cover of a golf ball would look like inside out. Think dimple out or raised dimples. Your cast the same but the end result is a pliable socket thousands of "raised" dimples (oxymoron I know). Once my leg doc receives this piece from the manufacturer I am cast again while wearing it. When I came back the next time the socket is complete and in one piece. The inner socket is epoxied inside the carbon socket. I also use a proprietary pump system. Here is what is so cool about this new socket: The thousand of raised areas create a larger surface mass, 60% larger mass to be exact. Now I have a much larger area holding vacuum on my stump liner. The raised area also acts in a gripping fashion and the combination creates hold that I have never felt before. There are now about 15 of us on the globe with this new tech. They are designed by an amputee business associate of my leg doc and are now being made by Otto Bock I'm about 5 months in and the socket feels more part of me and the vacuum hold is amazing
  14. 1 point
    Hi Friends Old and New! Been away for too long but had to share this with you all. When the hot weather comes I like many of you suffer from a sweaty stump, last week my chiropodist gave me a tip, been doing it ever since and it works no more sweaty stumps! He told me to try Witch hazel a natural product applied with a cotton pad, don't ask me ehy or how it works but it does may also help swelling and itching. http://en.wikipedia.org/wiki/Witch-hazel Take care all of you Neil x
  15. 1 point
    It's much, much better on the foot front, Tammie...and very strange on the prosthesis side of things! My foot wound has totally healed and I was back up and walking again. Then........I was asked to be the BK "fit model" for a seminar by Otto Bock demonstrating how to cast and fit for the Harmony elevated-vacuum system. It was a fascinating experience, and I wound up with a test socket by the end of the day. I was thrilled! Then....well....we took the test socket from the seminar and set me up with a full trial leg. It's been a love/hate relationship ever since! I love, love, love the stability of the leg and the feeling of having a fully natural stride again. I HATE the fact that I'm getting a LOT of skin breakdown! The Otto Bock guys have been called in to advise on revisions, and they think the problem is in the liner, since I'm not a "clear" standard size. Next step is to try a custom liner and see if that will stop the leg from trying to eat me alive. In the meantime, I'm currently out of all prosthetic devices and back in the wheelchair until things heal up on the stump. I really and truly hope and pray that they'll be able to adjust things so that I can go on using this leg...even with it trying to eat me alive, there's a lot to love about this leg. Sooooo....wish me luck, gang!
  16. 1 point
    You all deserve one as well for all the work you do in the background to make this forum work for all of us...We do appreciate it!
  17. 1 point
    What Ann says makes sense. Tell your legman you want to try different systems. If he is unwilling to do this, try another legman. It is your longterm comfort and health that is important here. He can make suggestions, but only you know what works best. I don't have a skin graft, but cannot wear the pin system because of the pulling on the end of the stump. I've never used the Harmony system, but have used a vacuum system. I liked the way it made the leg feel like it was really part of me, but I didn't like the way it kept it's tight fit while sitting. It all boils down to the fact that no one system is good for all of us. I've been using Ossur's Seal-in X5 liner for the past 4 years and love it. It has the convenience of a pin system without the pulling and yet the snug fit I like as in the vacuum without that tight fit of a vacuum. It works quite well for me.
  18. 1 point
    I have a Comfort Flex socket as a LAK. I use a more firmer plastic that still is flexable but not flimsey. Also, I pull my stump into the socket using the parachute material. There is no liner as my skin is tight against the plastic socket which fits inside the frame. No problems at this time.
  19. 1 point
    Hi there, I am myself a hip disartic and live in Australia. I have done quite a lot of searching for information in relation to legs. I have a young prosthetist who is willing to try different things. I have had one leg which did not work so well for me as it did not have padding in places where I needed it. I visited a prothetist in the US who works with Iraqi vet who have lost limbs and he uses body armor pants with gel bonded inside to give greater comfort. I know a couple of other disartic men who don't have those kinds of issues but they have been amp for many many years! I need comfort. I will get the leg on 5th Nov and am happy to send photos. My prothetist will be happy to share what he is doing. It has been a learning eperience for him! We use a socket that hugs your buttock and hooks over your hip bone. It does not go over to the other side as the old ones used to. He either used a velcor belt system or a ratchet (like the kind you get on a skate boot). I like the ratchet as once tight it does not move. Ask me questions and I will see if I can help. Good luck Linda .
  20. 1 point
    I've updated the article massively, have a peek here and let me know what you all think.. http://91.151.214.107/viewtopic.php?f=38&t=10729
  21. 1 point
    Going to update the article soon as lots of stuff has changed so more advice to give, but on a different tack I treated myself to a helmet camera so here's a little video of me and friend at thetford forest. Enjoy :) http://rikk.smugmug.com/gallery/2860915_HL...4118_UinSV-A-LB
  22. 1 point
    HI I dont think I am even wanting to write on this post, because I picked something along the lines of dating still exists, it was the other one that tied with this one, but I have heard so many times that theres a guy out there for you and I am like ok...but my leg doesnt bother me, and I wear shorts all the time to school and I think every guy knows there is something wrong, but I havent been on a date and I think I am too young to actually know what love is, because all I hear and see at school is PDA and breakups, so I dont see where in my case, and age that I could know what love is, I know I am pretty, because GOD made me special. So if a guy likes me, someday he will sweep me off my feet, sometimes I get so overwhelmed and forget to think about whats really important to me, believing and trusting in yourself and knowing who you are and how much you have to offer this world is everything, for all people who havent dated and dont want to, I dont blame you, but if you get the chance, then have a great time. At my age that is what every girl is doing, going out on dates and ending up saying things they dont mean. I am not sure I guess I have mixed emotions on what is love really? Lesley
  23. 1 point
    Here's mine again! My Own Story I had been joking with other patients on the orthopaedic ward that the doctors didn’t know what was wrong with me and despite flu-like symptoms for the ten days previously, I wasn’t unduly concerned about my health. The aches in my leg as well as a couple of scabs on my knee that were taking longer than usual to heal were causing slight concern, but I had no reason to expect the sudden flurry of activity around my bed. A group of doctors, consultants and other medical staff all turned up to see me and seconds later the curtains remained closed, and the top surgeon Mr Ashley Brown & his Team at Southend General Hospital broke the news to me in no uncertain terms. He told me he had to operate immediately and even then he could not be certain he could save my life. He said he had no choice but to continue cutting until he was certain he had removed all the infected tissue. I was suffering from Necrotising Fasciitsis,a Tissue -eating bacteria which cuts off the blood supply and attacks organs, muscle and body tissue at a rate of 2cm an hour! Antibiotics can’t treat it, and if not dealt with swiftly it can kill and often does. When the bacteria is removed from the body, it leaves toxins into the bloodstream causing the body to go into toxic shock, and sufferers often die from this rather than the NF. I couldn’t believe what I was hearing and there was barely time for the news to sink in. I had just two hours to prepare myself for an operation that at best I would survive, with a leg missing, but at worst I would not survive at all. There was just enough time to see my German girlfriend Silke and my two daughters, Amy 12 and Louise 15. ( I am divorced) It was an emotional time for everyone, but at least I didn’t have long to dwell on what was about to happen. It was hard to believe that just a couple of weeks earlier life had been perfectly normal, and now I was being told I could die. I worked as a roofer, and only twelve days previously had been working on a flat roof, where there had been some stagnant water in a blocked outlet. It was nothing unusual and I am quite used to have clear leaves and other debris from such ducts. This time, the foul-smelling water obviously harboured this deadly germ and a couple of scabs on my knee provided the point of entry for the infection. Sore knees are just one of the hazards of working as a roofer, and as one of my hobbies is scuba-diving, they sometimes don’t get a chance to heal very quickly. Just a day after working on the roof I began to feel unwell, with flu-like symptoms, and aches and pains in my leg, which I put down to a pulled muscle while I had been working. This continued for almost a week, before a friend took one look at me and said I really ought to go into hospital. Even then staff didn’t know what the problem was, apart from the Dermatologist a Mrs Henderson who’s quick thinking in sending away cultures for analysis confirmed the diagnosis of NF. Following the operation, I was put in a sedated coma for ten days, as the toxic shock took over my body, and I was left to fight for my life. It’s a little like having sunburn on the inside as the body heats itself to such a high temperature to fight the bacteria, and all this overheating causes the body to burn up many calories. It as very fortunate I weighed a hefty sixteen stone because those who don’t have any excess weight, literally waste away. Afterwards I weighed just 11 1/2 stone, and soon after I came out of the coma, I remember my mother trying to force me to eat chocolate as nursing staff had told her how important it was that I should eat. My leg had been cut eight inches above the knee, and because it wasn’t a planned amputation, and surrounding muscles were infected, it wasn’t finished in quite the same way. Fortunately an eminent plastic surgeon happened to be at the hospital that day. Mr Lotion Kengesu He, along with many other doctors were present during the operation, as it is something very rare. His expertise ensured I was left with a stump that could accept a prosthesis ( walking aid) without the need for further surgery. During the ten days I was in the coma, Silke, an osteopath, talked me through what had happened, and I did take in things she had been saying. The first time I was fully conscious I didn’t want to look at what was left of my leg, but it is vital to do so as part of the recovery process. You have to accept what has happened, andI was given counselling by some wonderful nurses, (by this time I had been moved to a specialist Plastic sugery unit St Andrews in Chelmsford ) who helped to look at my leg, touch the wound and see what had been done. It is hard to describe my feelings afterwards, as it is something none of can ever imagine happening. The first time I tried to sit up was awful. I had been lying down for two weeks, and as I raised my head the room began to spin, I felt nauseous and it was very emotional. It took a while to come to terms with what had happened. I spent a couple of months in rehabilitation , before finally coming home, and learning to adapt to a totally new way of life. I now wear a prosthesis and prefer not to wear a cover on it to make it look like a real leg. The phantom pains that amputees can suffer from are very painful, as the nerve endings look for a path, and if you start kidding yourself the false leg is a real one, the pains can be far worse. My family has coped well with what has happened to me and my girlfriend has been very supportive. Obviously I had to give up my job as a roofer, and am now still keeping busy. Studying for a diploma in I.T. Scuba diving & playing chess! I plan to go to University in January for a short course to train as an Access Auditor, helping to ensure public buildings come into line with various disability requirements. I also Work as a voluntary visitor for amputees and the disabled. Disablement has opened my eyes and made me reflect on how fragile our lives can be. Until this happened I was just like every other able bodied person, not really caring much about the disabled. But I now know just how much discrimination there is amongst the British whose ,traditional stereotypical stiff upper lip, and dislike of anything not quite normal prevents them from really looking at what’s going on and seeing how they can help. I am very different to the man I was a year ago and despite the trauma I have been through, I have emerged a much better person. As long as I get up one more time than I fall down! (sic Chris Moon) 1 leg still standing! :D Ps Since writing this piece 4 years ago, I now work as a Access Officer at Chelmsford Borough Council, I work as a model part time also. I have married my beloved Silke and I have continued working within the disabled movement: I play amputee football for Southend United, Scuba dive, play chess for Essex.
  24. 1 point
    My story I was a paratrooper in the army and I was deployed in northern Iraq. I was sleeping in one of Chemical Alis palaces. At about 3am I woke up and had a bad feeling didnt know what it was when all of a sudden BOOM an RPG came in through the window bounced off a wall and blew up at my feet. I crawled for my weapon when one of my sergeants saw that i was hurt and called a medic. I didnt really know how bad they were until i got back to the states about 10 days later. They originally told me I would only lose my left leg but when I finally saw my right foot I knew it was gone to.
  25. 1 point
    I've found dating to be actually a little easier now that I'm an amputee. I'm more comfortable with my body....as if the things I was worried about before have become so unimportant. I'm relaxed in my own skin, and I think that helps project a sense of confidence & ease. My only advice (& I learned this the hard way) is be up front about your disability. Honesty is a good starting point, and if the person decides they can't handle it, then you are better off without them.
×