Jump to content
Heather Mills - Amputee Forum

Leaderboard


Popular Content

Showing most liked content since 01/24/2017 in all areas

  1. 1 point
    Hi Everyone, Wow - Hard to believe it's been almost a year since I've posted here! It's crazy how time flies. I hope everyone is doing well and getting ready for the holidays! This update is going to be quick, which is a good thing. Lauren is doing very well. Every day continues to get easier for her, and she has really settled into her new norm. The days of thinking about "pre amputation" and "post amputation" are getting fewer and further between for Lauren, and she had an amazingly good semester at school. She's home now, and it's great having her here for the holidays! She continues to use her cosmetic arms regularly, and I think they've given her more confidence to go out and just be herself, even though they aren't functional unto themselves. Cold weather is always a little harder for Lauren given that it's not as easy to go barefoot or in sandals, but she doesn't let it get in her way, and it is truly amazing how her feet and teeth can do so much. The human body truly is amazingly adaptable. I'm going to try to post some new pictures here a little later so you can see just how far Lauren has come. I hope everyone is well. Best wishes for a fantastic holiday season. -Marion
  2. 1 point
    I've been an amputee for almost 50 years now, RBK, had a ton of prosthetics over the years. First were the PTB legs. In the past ten years, I've been using the OttoBock Harmony system, first the Harmony HD, and now the Triton Harmony . Lately I've been having some issues on my stump, that seem like old PTB troubles. With the PTB, I'd have an occasional problem with "splitting" around the scar area, if my leg wasn't making good contact on the distal end, now I seem to be having the same problem with my Harmony socket. I know, if there is a gap between the bottom of the socket and stump, it can cause a "hickey" like issue, but this issue appears to be like the old PTB "splitting" issue. I have been to Hanger with this twice in the past week, even walked on crutches for several days. The tech did remove a "tech" spot (little urethane spots that OttoBock provides with a new system) which was put in there when my socket was new, February 2015, and it is feeling better, but I'm still getting a bit of drainage at that spot after a day using the prosthesis again. Just wondering if anyone has had a similar problem with a vacuum system. I've found over the many years of being an amputee, that things correct better by still using the leg, rather than laying low with it off. I am a Veteran, and deal with the VA, I am trying to get into the Amputee Clinic, but sometimes it takes a long time to get in touch. I'd appreciate anything anyone has experienced of similar issues. Tom
  3. 1 point
    Wow, 8 months now on this socket, been a really good fit!
  4. 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
  5. 1 point
    Hi there, over two months now with this new socket, and it's going great, feels really good! I'm still having some minor issue with maceration on my distal end, but honestly don't think i can do anything about that, since it's always warm and moist in the liner. Doesn't hurt or anything, just looks funny. I tried using an anti perspirant before, but that seemed to make it even whiter looking! Anyway, this socket feels way better than my previous ever did! Knock on wood! LOL!
  6. 1 point
    Hi Everyone, Oh my, I can't believe it's been so long since my last posting here. I hope everyone is doing well! Lauren is continuing to do very well. She has really adapted well, and makes progress every day. It's hard to believe how independent she has become compared to where we were and how she felt even months ago. Between her feet and other assistive devices, she can do so many things. There are, of course, still days where she misses her arms and feels down, but she's really made the leap to realizing that life is about so much more than her arms. She's still Lauren, and she's still amazing! She's doing well at school, and socially, it's so great for her. She's gotten more comfortable with her body image, too, and has started going out with her cosmetics more often. This has become her new normal, and she's living life. So that's the short update. I'll try to come back more often. I hope everyone has a great weekend! Best, Marion
  7. 1 point
    Just a very quick update.. Things are moving along.. I have a date for my elective, below knee amputation - May 20th 2016.. I'm looking forward to it.. I'm so sick of the pain that I'm in that I'd happily have the surgery tomorrow if I could but in the UK things move slowly. So I'm all set.. I have my wheelchair, I've met and spoken with my rehab team; consultant, head nurse, physiotherapist and occupational therapist, I had my pre-op assessment last week and now I just have one more appointment with my surgeon on May 4th to sign my consent form and to go over any final details. I'm most dreading the anaesthetic as I've been ill for days after previous GAs.. A friend of mine who I know through an amputee FB group has just had his surgery done with nerve blocks alone, he was awake throughout and said it was surreal but much better to recover from than his previous surgeries where he was asleep so I'm hoping they may do that for me.. So 6 weeks to go..
  8. 1 point
    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 .
  9. 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!
  10. 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!
  11. 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.
  12. 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.
  13. 1 point
    Susan, when I get a rash like you are describing, I have used a Benedryle (?) cream, or the aloe gel version on it. Either one.. The cream is going to give you some "slip" if it's a new liner, and the gel won't.. Also, the local CVS pharmacy carries the same things in the generic brand too, and they work just as well. I get a rash at the top of a new liner, every time, and have found that the aloe version works really well for the itching and the rash will heal in no time. You might try something like that.....I hope it heals soon, those things can drive you crazy.
×