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Hi I'm new here. I'm 20 years old and I'm in college. I was born with a congenital condition but I didn't know until I was a senior in high school. I was a really competitive long distance runner and it's actually how I found out. I landed on a stick wrong on a 10 miler and it damaged what's known as a tarsal coalition. It's pretty rare. I've only talked to one person who has it in the last 3 years. It's basically where bones in the foot didn't separate in the womb all the way. I had 3 TCs and 3 resection surgeries. Now I have advanced degeneration in a neighboring joint in my right foot ( they don't know why) and long list of bone problems associated with it. I have chronic pain that makes it almost impossible to walk some days. I'm only able to do the bare minimum to get what i need done. I also have nerve problems in my foot that started after my third surgery. I can barely move my toes and have decreased movement in the rest of my foot and it's twitchy😂. I'm getting a nerve test soon for that. I've actually gone all the way to Mayo Clinic. The only option they are giving me is a hindfoot fusion and my parents made me schedule surgery for the summer. I've done extensive research on fusion and I feel like I'm signing my future away. I'm so young that there is no way i won't come won't need further surgeries and have arthritis through out my body. And that's without taking into consideration the limitations a fusion gives you even if it took most pain away. I don't think I will ever be happy with a fusion. I've been researching and reading about amputations for a year now and I really think amputation is the best option. I feel like it could give me my life back that a fusion could never do. I'm more scared of having extensive limitations than any sort of limb loss. I've tried talking to my family and people I'm close to about amputation but I've gotten a lot of backlash. Everytime I try to tell my doctors what I want to do but I chicken out because I don't even really know why. I guess would you fuse or amputate? How do you even convince people amputation is the right thing to do? Any advice is appreciated
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