Everything posted by Aimz
Aimz posted a topic in Support Group TopicsHi 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
Aimz replied to Aimz's topic in Support Group TopicsHi curiousrubes, Sorry to hear about your partner, I really understand what he is going through. I read my original post and just sat here for a minute contemplating this crazy journey I have been on, the anguish and how much I have agonized over the decision is so raw in that post - I wouldn't wish this on anybody. I did a lot of research about the type of amputation that I wanted to get, and in 2016 after I was told by my surgeons there was nothing else I could do, I booked an appointment with Dr Munjed Almuderis and asked him to CHOP! the one thing I was scared of most about the amputation was that I would end up being worse off after the amputation, develop neuromas, skin breakdown, not be able to wear a socket, or the myriad of other things that amputees face. I decided that if I was going to have this done, osseointegration was the correct option for me. I attended several workshops, met many past patients and asked MILLIONS of questions, I was put through psychological tests and every type of physical test you can imagine. Based on all of the scans and tests, Dr Almuderis engaged with a number of other surgeons and asked if they could try one last operation to save my foot. I reluctantly accepted. The operation made a huge difference to my foot, I can now walk around much more freely and am in less pain. But every aspect of my life is still severely impacted. I have decided to just attempt to move on for the next year or so (because I can walk), and I will have the operation in the next few years when it better suits me to take time off. I have also decided that I will delay the surgery until my partner can take at least 3 months off and be beside me the whole time for support as we will have to go to Sydney for the surgery. Obviously I will be distraught when it happens and its highly distressing, but I no longer feel the anguish that is so obvious in the original post. Coming to terms with something like this is a real mental process - but I now accept that it will happen and it will be the best thing for me when it does. It is the right decision. And because of the research I have done, the amputees that I have met, the relationship I have with my surgeon and the type of surgery I have chosen - the fear of being worse-off is gone. I am scared of finding the strength to actually go through with it on the day, but not scared of the outcome anymore. I recommend that your partner meets with a number of surgeons and meets amputees etc. I even met with prosthesetists to look at legs and touch them. The whole process has become extremely normalized to me now, I discuss what will happen in the same matter-of-fact tones as I would discuss my car getting serviced because I have made sure that I am comfortable with every aspect. I often chat openly about what I plan for next year or make an off-handed comment and realise that the people I am speaking to are staring at me in horror at the concept of what I just said, I have to remind myself to not be so blasé in front of others - but that is how normal it has become to me, I don't even think about it when I speak. I have met a few elective BKA people (before and after their procedure) and they have been a lot more freaked by the concept than me, I honestly believe this is partially because they were just given a referral to see a surgeon and they had whatever type of amputation that surgeon offered - they feel swept along by the process rather than in charge of every aspect of the decision. That is not to say I wont have a melt down when it happens, but I don't think I will have the "what if?" questions they struggle with. It is a big decision and a lot of old-school surgeons around - a lot of advances have been made in pain management, types of amputation, prosthetics, even how they manage the ends of the muscles and nerves that are cut - and I found processing this information and using it to make the best decision for me very comforting and very much a part of the process of coming to terms with everything. The hardest thing is knowing what to ask! I hope that helps. From the bottom of my heart I wish you both all the best. Let me know what your partner decides.