What’s it like to live footless (but maybe not so much fancy free)?
January 4, 2024 7:18 PM Subscribe
I’m an athlete facing a mobility ending foot surgery and want to seriously consider amputation as an option. What’s it like? (Lots of flurries, grab a shovel!)
Backstory: Competitive marathoner and triathlete. I tore my post tibialis tendon a year ago on the damn treadmill doing just maintenance miles/while not training for anything. When I first learned of the split tear (right under my medial malleus, extending to my spring ligament where it attaches), my ortho was hand wavy about it and put me in a boot for 8 weeks. He seemed to think it was an old injury I ran through that got reopened when I got new orthotics. I followed up with rheumatology due to swelling and my ortho’s suggestion…rheumatology was fine. Then it took me a few weeks to wean out of the boot into new orthotics. I also got fitted for a AFO/Ritchie brace but can’t wear it because it creates more pain from lateral pressure. I then got in the pool for a few moths aqua jogging from May to September, then lost the pool due it to being outdoors. Then I transitioned to weight bearing exercise in October on an exercise bike but even after a few months still can’t tolerate basic walking. My house is also all stairs - I use double crutches on the stairs because they feel just downright dangerous. I am doing nutritional work (high protein anti-inflammatory diet), and went through 5 months of PT. None of it helped. I barely leave the house due to such limited mobility and pain. My QOL is in the gutter and I don’t have much emotional support. Literally all I can do is get on the exercise bike for 45 minutes with barely any resistance which I can do with 4/10 pain, which is is crazy because stepping off a curb is like an 8/10 pain and basic walking is a very rippy 7/10. I’ve got to MOVE though!
I have appointments coming up with a few surgeons. Last summer I also consulted them and they said I would likely need joint fusion surgery of my mid and hind foot (I have a pes planus flatfoot), have to have my Achilles and calf lengthened to accommodate a heel osteotomy with screws, and have a bunion to correct. After all that, I’ve been told, I’ll still have pain but will also have very limited mobility and will never run or bike or jump again…the benefit is I get to keep my foot. I live in a city and am carless, so limited walking is going to not really fly. I love walking and to give that up is just a bridge too far.
I think I learned this year I cannot do limited mobility - my sanity and mental health have suffered, I can’t manage my GAD as well and I’m fighting depression. I can’t even walk my dog. :( Friends don’t want to talk and don’t seem to remember I exist (this is a issue of needing to make a new friends group…my current friends just want to go drinking at bars and I quit drinking 5 years ago). Mr. Fish is angry that I’m not “putting myself out there to make new friends” but I’m in crazy pain and can’t walk. Mr. Fish and I are really active and he has checked the heck out of our relationship with all of this when I’ve really needed him and to lean on us. He has been a terrible partner emotionally with all this and I’m crushed. We met and fell in love running and his distancing really hurts and he is not receptive to hearing what I’m dealing with or feeling. In a sense this injury killed a piece of us and it hurts that he doesn’t seem to value our relationship or even validate my feelings when I try to open up to him.
Anyway, I’m done with this nonsense and need to make a choice - I’m in my 40s, in good shape and am healthy aside from having an autoimmune disease that makes me high risk for Covid. The joint fusion surgery sounds dreadful and only has a 60% success rate and a 2 year recovery where I will lose all fitness and have to learn to ambulate again (12 weeks in a cast, 18 weeks in a boot).
However, I’d like to bring up transtibial amputation as an option and am curious about what life is actually like as an amputee. There is a lot of innovation in artificial limbs and recovery to start working on walking is a mere 12 weeks. As an athlete, I think I would have an easier time with pushing to train to be mobile and maybe even run with an artificial limb rather than be miserable with a fusion that will give the same QOL as I have right now which is not tenable…I’m afraid of this depression. Regardless of my decision, the plan is to move to a place with no stairs before whichever surgery. Because housing is crazy here, I would even be ok with renting a place while we sell our current place, but I digress. I need to make new friends anyway, so I would envision being active in support groups or even adaptive sport clubs which we have in my city.
So…tell me about amputation (hell, even joint fusion) - what’s it like? Is maintaining a healthy residual leg a huge challenge? What’s your independence like? What about sports, movement, and being active - what is that like and what are the big challenges? Have I lost my damn mind?
Backstory: Competitive marathoner and triathlete. I tore my post tibialis tendon a year ago on the damn treadmill doing just maintenance miles/while not training for anything. When I first learned of the split tear (right under my medial malleus, extending to my spring ligament where it attaches), my ortho was hand wavy about it and put me in a boot for 8 weeks. He seemed to think it was an old injury I ran through that got reopened when I got new orthotics. I followed up with rheumatology due to swelling and my ortho’s suggestion…rheumatology was fine. Then it took me a few weeks to wean out of the boot into new orthotics. I also got fitted for a AFO/Ritchie brace but can’t wear it because it creates more pain from lateral pressure. I then got in the pool for a few moths aqua jogging from May to September, then lost the pool due it to being outdoors. Then I transitioned to weight bearing exercise in October on an exercise bike but even after a few months still can’t tolerate basic walking. My house is also all stairs - I use double crutches on the stairs because they feel just downright dangerous. I am doing nutritional work (high protein anti-inflammatory diet), and went through 5 months of PT. None of it helped. I barely leave the house due to such limited mobility and pain. My QOL is in the gutter and I don’t have much emotional support. Literally all I can do is get on the exercise bike for 45 minutes with barely any resistance which I can do with 4/10 pain, which is is crazy because stepping off a curb is like an 8/10 pain and basic walking is a very rippy 7/10. I’ve got to MOVE though!
I have appointments coming up with a few surgeons. Last summer I also consulted them and they said I would likely need joint fusion surgery of my mid and hind foot (I have a pes planus flatfoot), have to have my Achilles and calf lengthened to accommodate a heel osteotomy with screws, and have a bunion to correct. After all that, I’ve been told, I’ll still have pain but will also have very limited mobility and will never run or bike or jump again…the benefit is I get to keep my foot. I live in a city and am carless, so limited walking is going to not really fly. I love walking and to give that up is just a bridge too far.
I think I learned this year I cannot do limited mobility - my sanity and mental health have suffered, I can’t manage my GAD as well and I’m fighting depression. I can’t even walk my dog. :( Friends don’t want to talk and don’t seem to remember I exist (this is a issue of needing to make a new friends group…my current friends just want to go drinking at bars and I quit drinking 5 years ago). Mr. Fish is angry that I’m not “putting myself out there to make new friends” but I’m in crazy pain and can’t walk. Mr. Fish and I are really active and he has checked the heck out of our relationship with all of this when I’ve really needed him and to lean on us. He has been a terrible partner emotionally with all this and I’m crushed. We met and fell in love running and his distancing really hurts and he is not receptive to hearing what I’m dealing with or feeling. In a sense this injury killed a piece of us and it hurts that he doesn’t seem to value our relationship or even validate my feelings when I try to open up to him.
Anyway, I’m done with this nonsense and need to make a choice - I’m in my 40s, in good shape and am healthy aside from having an autoimmune disease that makes me high risk for Covid. The joint fusion surgery sounds dreadful and only has a 60% success rate and a 2 year recovery where I will lose all fitness and have to learn to ambulate again (12 weeks in a cast, 18 weeks in a boot).
However, I’d like to bring up transtibial amputation as an option and am curious about what life is actually like as an amputee. There is a lot of innovation in artificial limbs and recovery to start working on walking is a mere 12 weeks. As an athlete, I think I would have an easier time with pushing to train to be mobile and maybe even run with an artificial limb rather than be miserable with a fusion that will give the same QOL as I have right now which is not tenable…I’m afraid of this depression. Regardless of my decision, the plan is to move to a place with no stairs before whichever surgery. Because housing is crazy here, I would even be ok with renting a place while we sell our current place, but I digress. I need to make new friends anyway, so I would envision being active in support groups or even adaptive sport clubs which we have in my city.
So…tell me about amputation (hell, even joint fusion) - what’s it like? Is maintaining a healthy residual leg a huge challenge? What’s your independence like? What about sports, movement, and being active - what is that like and what are the big challenges? Have I lost my damn mind?
not a personal experience but i do have an amputation by choice fashion icon for you- Viktoria Modesta. you can find a lot more about her googling around but she is a very cool person with a great and active life.
posted by wowenthusiast at 7:50 PM on January 4 [1 favorite]
posted by wowenthusiast at 7:50 PM on January 4 [1 favorite]
I can't answer your specific questions, but another resource to look up is the Amputee Coalition.
posted by Leontine at 8:01 PM on January 4
posted by Leontine at 8:01 PM on January 4
Best answer: I strongly encourage you to look into the ExoSym and see if it's an option for you, before getting an amputation. Lots of folks previously scheduled for lower leg amputation (or with partial foot amputations already) have gotten ExoSyms instead and been very happy with them -- running ultramarathons, competing in powerlifting competitions, and (at least one person I know of) working as an active-duty firefighter -- just generally living extremely physically demanding, athletic lives doing what brings them joy.
Personally, my ExoSym has been life-changing for my debilitating ankle trauma/dysfunction. Technically it's an "dynamic axial offloading ankle-foot orthosis", but it's very different than typical AFOs. It's basically a prosthetic for your lower leg, but it wraps around your meat leg and thus doesn't require you to get an amputation to wear one. I take mine off to swim, shower (I tend to sit down on a stool in the shower anyway), limp around my apartment, and sleep. Otherwise I wear it almost all the time.
I was also very seriously looking into amputation. I had severe post-traumatic arthritis from a really bad compound fracture in my ankle. I was living in awful chronic pain, with debilitating loss of function that was making my world very small and my emotional and physical lives both completely miserable.
In the past, I'd gotten steroid shots from a podiatrist for a couple years that had successfully controlled the pain, but then they suddenly stopped working. My surgeon/podiatrist told me he did NOT recommend fusion or an ankle replacement as options that would restore my quality of life -- fusion has a high failure rate and would mess up my kick for swimming, and ankle replacements wear out every 5 years or so for young active people, meaning you're signing up for major surgery every 5 years for the foreseeable future.
With my post-traumatic osteoarthritis, I went from weightlifting, carrying 200 lbs of scuba gear, and being a commercial plumber working on big construction sites to struggling with the pain of standing up to walk to the bathroom or do my dishes. I became desperate. I started to look at every option... platelet-rich plasma and stem cells lacked empirical evidence, the surgeries were out, my status quo was unbearable. So I started looking at amputation and getting really excited about it. I asked my podiatrist about getting set up for an amputation, he strongly recommended that I try the ExoSym first, and the rest is history.
With the ExoSym, I train multiple times a week in kung fu, go hiking, rowing, carrying my scuba gear and go drysuit diving again (and warm-water diving, hah)... everything you can think of, and I'm *completely pain-free* while doing it. I personally hate running, but people run marathons in the thing -- you just have to learn how to move in it. I believe a lot of runners use a cadence of 180 with it? But again, I hate running, so I'm not the best one to ask. The physical therapists at Therapy Nexus know a ton about this, though, and are super helpful and friendly. (They even had their own ExoSyms made and learned how to use them, to better understand their patients!)
So basically, the thing is fucking amazing. It completely offloads my ankle. I am pain-free. And as a bonus, you develop glutes of steel using it, since you use your posterior chain to activate the device. The prosthetist customizes the device to your particular body, gait, and injury. He's also the guy who invented the ExoSym, and he's very good at what he does.
Caveats:
- Shoes are legitimately a pain in the ass -- I now wear two different sizes of shoes, including a men's 10.5 double-wide on the Exo side (when I was a women's 9.5 previously). I get the meat-foot side altered by a cobbler to add a little height to the soles to make my hips even. A lot of folks just build up inside the shoe with orthotics/inserts but I find that moved my heel out of the heel cup, making it slip, so I went the sole-altering way. (Here's an example of the process. I don't know that particular company, I just use my local cobbler.) It took me a long time to find shoes I was happy with, but now I have those and I just own multiple pairs. I like Merrell Moab 3 for hiking/everyday and (weirdly) Xero Daylite Hikers for kung fu. I think some people wear Speedgoats for running, but it varies a lot -- there are also a few New Balances that are popular, and a lot of people really love Brooks. The Brooks made me oversupinate and just didn't work for me, but everyone's body is different. Some places will sell you split sizes or give a discount on the second pair, others won't. But you of course get a starter pair of shoes from the clinic when you walk out the door with the device. The starter shoes were not my favorite, but they got me out and using the device, and it was miles and away better than my life of debilitating pain and lack of mobility. The prosthetist who makes the device and the ExoSym Facebook group as a collective community also both have a shitton of experience finding shoes that are a good fit for your particular needs, and can help you through the process.
- I got lucky and my insurance covered the Exo, but most people pay $10,000 out of pocket. Folks paying out of pocket often do fundraisers in their communities -- work, church, family, friends, whoever. I believe the clinic offers a payment plan as well. Insurance does not understand that the ExoSym is different than a regular AFO, and thus often balks at paying for it. YMMV.
- You need to travel to the Seattle area to get one. It's the only place in the world that does ExoSyms. I live in Seattle and I just periodically drive the 45 minutes out of town for a tune-up. If you live out of town, you can mail your ExoSym in and I believe the turnaround time is extremely quick (a few days, less than a week). Honestly, I'd want two if I had to send mine in -- my ankle is extremely fucked and I just can't function without my Exo. (Or if I was feeling too broke to buy a second Exo, I'd probably just wear an iWalk peg-leg crutch when my Exo was in the shop, but I'd be mad about it.)
But... downsides of amputation are you can't just put your foot back on to go swimming; it's a major invasive surgery that has a long recovery time; your foot/ankle is gone forever and if there are later medical advances that could help your ankle you can't take advantage of them; and -- this was really important to me -- insurance doesn't typically cover multiple prosthetics. Athletic prosthetics are generally considered "unnecessary" so you end up paying out of pocket. If you want a special one for running or swimming or other sports (and it sounds like you would), you're often looking at more than $10k out of pocket already per sports prosthetic. So amputation is definitely more expensive than an Exo, especially if you're going to do athletics.
Also, in my own journey of extensively researching amputation, it looked like sometimes it worked really well, and other times... a nerve got trapped somewhere bad in the stump and it exacerbated the pain. I watched a lot of Footless Joe videos while I was researching, which definitely gave me pause on pursuing amputation... although there are lots and lots of other amputation stories out there.
100% please feel free to DM me, I will email with you or talk on the phone or video call, whatever you want. I just went on this journey. I got my device this past February and while it was a major adjustment, I now cannot imagine my life without my ExoSym.
Before I had the ExoSym I couldn't take my own trash out or do my own dishes standing up, and the hardest day of my workday was walking from my desk to the bathroom. I was suicidal because not being able to move made me so miserable.
Now I'm pain-free and training in martial arts, yoga, barbell weightlifting heavy-ass lead, scuba diving and carrying all my own gear, hiking, and taking wonderful, physical, tiring classes where I have to stand up and walk around a lot, like glassblowing. I'm happy with life. I get to be in my body and enjoy movement. It took a bit to learn to use the device, but it was massively easier than a orthopedic surgical recovery (I'd know, I've had multiple), and although I wasn't jumping or doing kung fu in the first week, I was walking out the door with the device on day 1.
P.S. My ExoSym's name is Simone. She's a little sweaty, and a little clingy, but she's extremely supportive and we go everywhere together. :-D
P.P.S I'm sorry your partner is being so shitty. Chronic pain and lack of mobility is so incredibly difficult, and you deserve better support. In the meantime, it might be worth looking into wheelchair sports as a way to get some exercise? I know when my leg was broken I loved taking my wheelchair for a spin. Beat the snot out of crutches for getting a "run" in.
posted by cnidaria at 9:03 PM on January 4 [138 favorites]
Personally, my ExoSym has been life-changing for my debilitating ankle trauma/dysfunction. Technically it's an "dynamic axial offloading ankle-foot orthosis", but it's very different than typical AFOs. It's basically a prosthetic for your lower leg, but it wraps around your meat leg and thus doesn't require you to get an amputation to wear one. I take mine off to swim, shower (I tend to sit down on a stool in the shower anyway), limp around my apartment, and sleep. Otherwise I wear it almost all the time.
I was also very seriously looking into amputation. I had severe post-traumatic arthritis from a really bad compound fracture in my ankle. I was living in awful chronic pain, with debilitating loss of function that was making my world very small and my emotional and physical lives both completely miserable.
In the past, I'd gotten steroid shots from a podiatrist for a couple years that had successfully controlled the pain, but then they suddenly stopped working. My surgeon/podiatrist told me he did NOT recommend fusion or an ankle replacement as options that would restore my quality of life -- fusion has a high failure rate and would mess up my kick for swimming, and ankle replacements wear out every 5 years or so for young active people, meaning you're signing up for major surgery every 5 years for the foreseeable future.
With my post-traumatic osteoarthritis, I went from weightlifting, carrying 200 lbs of scuba gear, and being a commercial plumber working on big construction sites to struggling with the pain of standing up to walk to the bathroom or do my dishes. I became desperate. I started to look at every option... platelet-rich plasma and stem cells lacked empirical evidence, the surgeries were out, my status quo was unbearable. So I started looking at amputation and getting really excited about it. I asked my podiatrist about getting set up for an amputation, he strongly recommended that I try the ExoSym first, and the rest is history.
With the ExoSym, I train multiple times a week in kung fu, go hiking, rowing, carrying my scuba gear and go drysuit diving again (and warm-water diving, hah)... everything you can think of, and I'm *completely pain-free* while doing it. I personally hate running, but people run marathons in the thing -- you just have to learn how to move in it. I believe a lot of runners use a cadence of 180 with it? But again, I hate running, so I'm not the best one to ask. The physical therapists at Therapy Nexus know a ton about this, though, and are super helpful and friendly. (They even had their own ExoSyms made and learned how to use them, to better understand their patients!)
So basically, the thing is fucking amazing. It completely offloads my ankle. I am pain-free. And as a bonus, you develop glutes of steel using it, since you use your posterior chain to activate the device. The prosthetist customizes the device to your particular body, gait, and injury. He's also the guy who invented the ExoSym, and he's very good at what he does.
Caveats:
- Shoes are legitimately a pain in the ass -- I now wear two different sizes of shoes, including a men's 10.5 double-wide on the Exo side (when I was a women's 9.5 previously). I get the meat-foot side altered by a cobbler to add a little height to the soles to make my hips even. A lot of folks just build up inside the shoe with orthotics/inserts but I find that moved my heel out of the heel cup, making it slip, so I went the sole-altering way. (Here's an example of the process. I don't know that particular company, I just use my local cobbler.) It took me a long time to find shoes I was happy with, but now I have those and I just own multiple pairs. I like Merrell Moab 3 for hiking/everyday and (weirdly) Xero Daylite Hikers for kung fu. I think some people wear Speedgoats for running, but it varies a lot -- there are also a few New Balances that are popular, and a lot of people really love Brooks. The Brooks made me oversupinate and just didn't work for me, but everyone's body is different. Some places will sell you split sizes or give a discount on the second pair, others won't. But you of course get a starter pair of shoes from the clinic when you walk out the door with the device. The starter shoes were not my favorite, but they got me out and using the device, and it was miles and away better than my life of debilitating pain and lack of mobility. The prosthetist who makes the device and the ExoSym Facebook group as a collective community also both have a shitton of experience finding shoes that are a good fit for your particular needs, and can help you through the process.
- I got lucky and my insurance covered the Exo, but most people pay $10,000 out of pocket. Folks paying out of pocket often do fundraisers in their communities -- work, church, family, friends, whoever. I believe the clinic offers a payment plan as well. Insurance does not understand that the ExoSym is different than a regular AFO, and thus often balks at paying for it. YMMV.
- You need to travel to the Seattle area to get one. It's the only place in the world that does ExoSyms. I live in Seattle and I just periodically drive the 45 minutes out of town for a tune-up. If you live out of town, you can mail your ExoSym in and I believe the turnaround time is extremely quick (a few days, less than a week). Honestly, I'd want two if I had to send mine in -- my ankle is extremely fucked and I just can't function without my Exo. (Or if I was feeling too broke to buy a second Exo, I'd probably just wear an iWalk peg-leg crutch when my Exo was in the shop, but I'd be mad about it.)
But... downsides of amputation are you can't just put your foot back on to go swimming; it's a major invasive surgery that has a long recovery time; your foot/ankle is gone forever and if there are later medical advances that could help your ankle you can't take advantage of them; and -- this was really important to me -- insurance doesn't typically cover multiple prosthetics. Athletic prosthetics are generally considered "unnecessary" so you end up paying out of pocket. If you want a special one for running or swimming or other sports (and it sounds like you would), you're often looking at more than $10k out of pocket already per sports prosthetic. So amputation is definitely more expensive than an Exo, especially if you're going to do athletics.
Also, in my own journey of extensively researching amputation, it looked like sometimes it worked really well, and other times... a nerve got trapped somewhere bad in the stump and it exacerbated the pain. I watched a lot of Footless Joe videos while I was researching, which definitely gave me pause on pursuing amputation... although there are lots and lots of other amputation stories out there.
100% please feel free to DM me, I will email with you or talk on the phone or video call, whatever you want. I just went on this journey. I got my device this past February and while it was a major adjustment, I now cannot imagine my life without my ExoSym.
Before I had the ExoSym I couldn't take my own trash out or do my own dishes standing up, and the hardest day of my workday was walking from my desk to the bathroom. I was suicidal because not being able to move made me so miserable.
Now I'm pain-free and training in martial arts, yoga, barbell weightlifting heavy-ass lead, scuba diving and carrying all my own gear, hiking, and taking wonderful, physical, tiring classes where I have to stand up and walk around a lot, like glassblowing. I'm happy with life. I get to be in my body and enjoy movement. It took a bit to learn to use the device, but it was massively easier than a orthopedic surgical recovery (I'd know, I've had multiple), and although I wasn't jumping or doing kung fu in the first week, I was walking out the door with the device on day 1.
P.S. My ExoSym's name is Simone. She's a little sweaty, and a little clingy, but she's extremely supportive and we go everywhere together. :-D
P.P.S I'm sorry your partner is being so shitty. Chronic pain and lack of mobility is so incredibly difficult, and you deserve better support. In the meantime, it might be worth looking into wheelchair sports as a way to get some exercise? I know when my leg was broken I loved taking my wheelchair for a spin. Beat the snot out of crutches for getting a "run" in.
posted by cnidaria at 9:03 PM on January 4 [138 favorites]
(Oh, and I hear ya on the PT. I did 5 years of PT and still had progressively worsening function and pain before my ankle was finally toast. Turns out PT can't fix everything -- for example, it can't regrow cartilage, in my case.)
posted by cnidaria at 9:09 PM on January 4 [2 favorites]
posted by cnidaria at 9:09 PM on January 4 [2 favorites]
Oh, and I'm cycling again now too! I got pedals with pins to help the Exo side grip better, and I'm happy as a clam on both my electric bicycle and my regular (PB&J-sandwich-powered) bicycle. So basically, stuff sometimes requires little tweaks and adjustments to work with the Exo (my scuba drysuit was the most annoying/complex thing, but that's a particularly complex garment with a small target market). But in my experience so far, with my varied and gear-intensive hobbies, all the tweaks have been very achievable.
posted by cnidaria at 9:33 PM on January 4 [1 favorite]
posted by cnidaria at 9:33 PM on January 4 [1 favorite]
Best answer: This isn’t the advice that you asked for so feel free to disregard, but you mention things being difficult with your partner because you’re used to a a very athletic lifestyle together. I was in a relationship with a very athletic person for a long time and ultimately ended the relationship in my 30s because I couldn’t imagine growing old with someone who handled both my and his own injuries and limitations with impatience and abandonment instead of flexibility, caring, and understanding. Separate from the physical limitations you’re working through, I think it is worth spending time understanding what is going on with your relationship.
Personally, I felt my relationship was unsalvageable because of other major life goal misalignments and the general feeling that the other person was engaged in extreme athletic pursuits and other absorbing activities to run away from things in their life and I didn’t think that was meaningfully going to change. In other circumstances, or if I’d come to the realization it was an issue several years earlier, I would have given couples therapy a shot to talk through how we jointly dealt with adversity and how that would change over time.
posted by A Blue Moon at 2:59 AM on January 5 [9 favorites]
Personally, I felt my relationship was unsalvageable because of other major life goal misalignments and the general feeling that the other person was engaged in extreme athletic pursuits and other absorbing activities to run away from things in their life and I didn’t think that was meaningfully going to change. In other circumstances, or if I’d come to the realization it was an issue several years earlier, I would have given couples therapy a shot to talk through how we jointly dealt with adversity and how that would change over time.
posted by A Blue Moon at 2:59 AM on January 5 [9 favorites]
Best answer: I am an enthusiastic competitive runner and I read this with horror. I am so sorry you are going through this. I am honestly in shock that maintenance miles could lead to this serious an issue...? I have many questions about how you found yourself in this boat but I will spare them because they are not relevant to your question.
I have no specific advice about your unique situation, but I have some marignally informed speculation to offer. I have a family member who is a very experienced surgeon dealing in an area that involves a lot of elective procedures. He is constantly dealing with risk.
- There is the risk that you choose to perform a more invasive or extreme surgery, which one might reasonably consider an amputation to be, and something goes wrong during the surgery. Every surgery comes with risks and not performing surgery unnecessarily is a way of managing that risk. Even if the surgeon did everything correctly according to accepted practice, and they were just unlucky that something unusual went wrong, the fact that they performed an "unnecessary" surgery will be an issue.
- There is also the risk that the patient decides, months or years later, that they didn't actually want to have this surgery after all, that the surgeon did not properly inform them of the risks or other options, that the surgeon has irreperably harmed them.... and now they are going to sue.
Because of these risks, many surgeons in my country will practice defensively. I could imagine that many would outright refuse to amputate a foot that appears to be eminently salvageable, even if the patient is screaming that the expected outcome is a terrible one, because if they decide to amputate and it goes to a medical tribunal or a court, it would be very hard to defend.
And that is in my country; we don't have US levels of litigousness, and the compensation offered in medical malpractice suits is much lower.
And would the insurer even be willing to pay? The insurer will have criteria for accepting that a case is medically necessary before they agree to fund a surgery.
That caveat again: I have little insight into your situation, and I am not a doctor (I just know a guy who is). But you may need to prepare yourself for this issue to come up when you start doing your consultations.
posted by Probabilitics at 5:08 AM on January 5 [5 favorites]
I have no specific advice about your unique situation, but I have some marignally informed speculation to offer. I have a family member who is a very experienced surgeon dealing in an area that involves a lot of elective procedures. He is constantly dealing with risk.
- There is the risk that you choose to perform a more invasive or extreme surgery, which one might reasonably consider an amputation to be, and something goes wrong during the surgery. Every surgery comes with risks and not performing surgery unnecessarily is a way of managing that risk. Even if the surgeon did everything correctly according to accepted practice, and they were just unlucky that something unusual went wrong, the fact that they performed an "unnecessary" surgery will be an issue.
- There is also the risk that the patient decides, months or years later, that they didn't actually want to have this surgery after all, that the surgeon did not properly inform them of the risks or other options, that the surgeon has irreperably harmed them.... and now they are going to sue.
Because of these risks, many surgeons in my country will practice defensively. I could imagine that many would outright refuse to amputate a foot that appears to be eminently salvageable, even if the patient is screaming that the expected outcome is a terrible one, because if they decide to amputate and it goes to a medical tribunal or a court, it would be very hard to defend.
And that is in my country; we don't have US levels of litigousness, and the compensation offered in medical malpractice suits is much lower.
And would the insurer even be willing to pay? The insurer will have criteria for accepting that a case is medically necessary before they agree to fund a surgery.
That caveat again: I have little insight into your situation, and I am not a doctor (I just know a guy who is). But you may need to prepare yourself for this issue to come up when you start doing your consultations.
posted by Probabilitics at 5:08 AM on January 5 [5 favorites]
Best answer: +1 to everything cnidaria said about Exosym. My brother traveled from Florida to get it last fall. It has changed his life dramatically after 15 years of pain due to a failed tarsal coalition surgery. He is pain free for the first time in his adult life and it is a joy to see. The process for out of town patients was smooth. Feel free to memail me about it but I can’t encourage it to you enough, regardless of where you are in the world.
posted by tatiana wishbone at 6:14 AM on January 5 [11 favorites]
posted by tatiana wishbone at 6:14 AM on January 5 [11 favorites]
I have no input on this but I was reminded of Footless Jo who Youtube recommended to me a while back.
posted by Awfki at 6:35 AM on January 5 [4 favorites]
posted by Awfki at 6:35 AM on January 5 [4 favorites]
I was also going to recommend looking at the ExoSym! I worked at the clinic where they were originally developed for a bit and they're legitimately amazing. It's very much a prosthetic-but-without-amputation.
posted by DebetEsse at 10:04 AM on January 5 [2 favorites]
posted by DebetEsse at 10:04 AM on January 5 [2 favorites]
2nding Footless Jo for the good, bad, and ugly about living footless.
posted by hydra77 at 1:21 PM on January 5 [1 favorite]
posted by hydra77 at 1:21 PM on January 5 [1 favorite]
Hi there! I really debated about commenting because I can't answer the question, I don't know what it's like to be footless.
But I do know what it's like to have my mobility and life seriously limited by chronic pain and despair that even a major surgery could really make a difference.
I have serious arthritis in both knees and have torn the meniscus in both knees. Back when I had only torn one meniscus I had a surgery to treat (though not repair) the pain/disability in that knee. My recovery started well but soon I was back to a level of pain that was as bad as and sometimes worse than the pain that made me opt for surgery. The only hope my orthopedist could offer was knee replacement which I was completely ready to do but there was no way to schedule it for at least 3 months because of the time of the earlier surgery plus I had no more money for my share of the surgery, plus I was in danger of losing my job for nearing FMLA limits on protected time off of work (my job, which I love, is on my feet).
So I was desperately searching for any way to cope with the pain until I could get the surgery and I stumbled into the Curable App. Basically I have learned that our body's pain experience is changeable. I was actually enraged by the very idea of the whole thing, which I mistakenly saw as "the pain is all in your head". I went searching for bad reviews to see it debunked but kept coming across lots of great reviews of people who said their lives were changed, and eventually thought, well, I could try it.
It's expensive for an app, about $72 for a year (though you can also subscribe monthly) but it is cheap for something that gave me the relief I experienced. I went from giving up dancing, hiking, and near to giving up my job and suffering greatly every day to dancing, hiking, and still working on my feet full time. I still have pain, I still have shitty knees as evidenced by x-rays and MRIs. I am still candidate for knee replacement surgery and still may get it one day.
But I experience so much less pain that when I tore the meniscus in my other knee, I thought, "let's see how this goes without the same surgery I had on the first knee...." and I got back to baseline pretty quickly.
I would recommend the Curable App (and/or similar and affiliated sources below) even if you get a foot amputation, because there's no guarantees that the glitchy pain feedback system we've got won't deliver the same or worse endless pain from the amputation.
The Curable App has a free podcast called "Like Mind, Like Body" and I highly recommend it, especially episode 18, "Pain Is The Worst" where the 3 app creators tell their personal stories of life with three different life-limiting versions of chronic pain.
Curable has another podcast "Tell Me About Your Pain" and its host Alan Gordon has a book "The Way Out". Additionally through Curable I was introduced to the therapist Nicole Sachs who has a book "The Cure For Chronic Pain" and a podcast by the same name, which I recommend. All these podcasts are available through any podcast service.
Anyway, I'm sorry things have come to the pass where you're considering a foot amputation! I hope that what I've shared will be helpful, like all things they are not perfect. Whatever comes next for you I hope you will find healing and relief. It sounds like things are bad now and that is a desperate place to be. Internet hugs from one internet stranger!
posted by Jenny'sCricket at 7:03 AM on January 6 [3 favorites]
But I do know what it's like to have my mobility and life seriously limited by chronic pain and despair that even a major surgery could really make a difference.
I have serious arthritis in both knees and have torn the meniscus in both knees. Back when I had only torn one meniscus I had a surgery to treat (though not repair) the pain/disability in that knee. My recovery started well but soon I was back to a level of pain that was as bad as and sometimes worse than the pain that made me opt for surgery. The only hope my orthopedist could offer was knee replacement which I was completely ready to do but there was no way to schedule it for at least 3 months because of the time of the earlier surgery plus I had no more money for my share of the surgery, plus I was in danger of losing my job for nearing FMLA limits on protected time off of work (my job, which I love, is on my feet).
So I was desperately searching for any way to cope with the pain until I could get the surgery and I stumbled into the Curable App. Basically I have learned that our body's pain experience is changeable. I was actually enraged by the very idea of the whole thing, which I mistakenly saw as "the pain is all in your head". I went searching for bad reviews to see it debunked but kept coming across lots of great reviews of people who said their lives were changed, and eventually thought, well, I could try it.
It's expensive for an app, about $72 for a year (though you can also subscribe monthly) but it is cheap for something that gave me the relief I experienced. I went from giving up dancing, hiking, and near to giving up my job and suffering greatly every day to dancing, hiking, and still working on my feet full time. I still have pain, I still have shitty knees as evidenced by x-rays and MRIs. I am still candidate for knee replacement surgery and still may get it one day.
But I experience so much less pain that when I tore the meniscus in my other knee, I thought, "let's see how this goes without the same surgery I had on the first knee...." and I got back to baseline pretty quickly.
I would recommend the Curable App (and/or similar and affiliated sources below) even if you get a foot amputation, because there's no guarantees that the glitchy pain feedback system we've got won't deliver the same or worse endless pain from the amputation.
The Curable App has a free podcast called "Like Mind, Like Body" and I highly recommend it, especially episode 18, "Pain Is The Worst" where the 3 app creators tell their personal stories of life with three different life-limiting versions of chronic pain.
Curable has another podcast "Tell Me About Your Pain" and its host Alan Gordon has a book "The Way Out". Additionally through Curable I was introduced to the therapist Nicole Sachs who has a book "The Cure For Chronic Pain" and a podcast by the same name, which I recommend. All these podcasts are available through any podcast service.
Anyway, I'm sorry things have come to the pass where you're considering a foot amputation! I hope that what I've shared will be helpful, like all things they are not perfect. Whatever comes next for you I hope you will find healing and relief. It sounds like things are bad now and that is a desperate place to be. Internet hugs from one internet stranger!
posted by Jenny'sCricket at 7:03 AM on January 6 [3 favorites]
Response by poster: Thank you to all for your comments, suggestions, and recommendations! I’m really grateful! Thanks for anecdotes and app suggestions as well.
I’ve been running for 28 years - started as a competitive high school and collegiate runner (XC, 5k, 3200, 1600) then moved to marathons several years post college. What’s weird about this injury is the progression - lately I’ve noticed in the mornings it feels like my orthotics no longer fit and they are a year old. I’ve honestly wondered it was an acute tear that could have been treated with a simple surgery but everyone assumed it was due to being a runner for a long time. Regardless, it’s way past that point now.
The Exosym was honestly surprising to hear about and I already reached out to them and got the paperwork, which I’ll bring/show to my ortho next week. I mean, if he approved a Ritchie brace that is not working then why not this, especially since his goal is to keep his patients out of the OR. It’s worth a shot! I’ll try to post an update, but thanks again for the support - love and miles to you all!
posted by floweredfish at 9:21 AM on January 6 [13 favorites]
I’ve been running for 28 years - started as a competitive high school and collegiate runner (XC, 5k, 3200, 1600) then moved to marathons several years post college. What’s weird about this injury is the progression - lately I’ve noticed in the mornings it feels like my orthotics no longer fit and they are a year old. I’ve honestly wondered it was an acute tear that could have been treated with a simple surgery but everyone assumed it was due to being a runner for a long time. Regardless, it’s way past that point now.
The Exosym was honestly surprising to hear about and I already reached out to them and got the paperwork, which I’ll bring/show to my ortho next week. I mean, if he approved a Ritchie brace that is not working then why not this, especially since his goal is to keep his patients out of the OR. It’s worth a shot! I’ll try to post an update, but thanks again for the support - love and miles to you all!
posted by floweredfish at 9:21 AM on January 6 [13 favorites]
I have a prosthetic leg (born this way, below the knee). I am not at all athletic but I certainly could be. I walk and bike with no problem and ran when I was younger. Some knee injuries made me less active, but my knee on the prosthetic leg side is all messed up from being in a leg all its life, a problem you would not have. What you see on the news is true—people with modern legs run and do all sorts of things.
posted by 8603 at 3:36 PM on January 6 [3 favorites]
posted by 8603 at 3:36 PM on January 6 [3 favorites]
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posted by heatherlogan at 7:45 PM on January 4 [1 favorite]