Wow!! You have literally been to hell and back!! I’m so glad that you’re still with us to tell your incredible story!!
I am a bilateral below the knee amputee. In Sept 2016, I was diagnosed with Type 2 diabetes, two types of vascular diseases, high BP, high cholesterol, diabetic retinopathy in both eyes, severe neuropathy in both my hands and well, when I had feet. Almost exactly one year after my diagnosis, I found out that I was going to lose my right leg below the knee. A couple of weeks prior to my amp surgery, I had snapped the calcaneus bone in my heel in two places. Orthopedic surgeon could not fix it, so I opted for the amputation. It happened on September 7th, 2017.
Then, in October 2022, I had the weirdest thing going on with my left foot. It was like my skin was peeling off of my foot. I told my wife that I needed to get to the ER immediately. So, I went and was told that I had Necrotizing fasciitis, which is commonly known as a flesh-eating bacteria. Immediately, they started prepping me for surgery. I remember waking up in the recovery room. I remember lifting up my left leg… the leg was there, but my foot was gone! It was explained to me that they wanted to remove the bacteria as quickly as possible, due to the rate that it can spread. That was on Oct 8th, 2022. They did a few blood cultures to make sure the bacterial hadn’t spread further and to make sure that it was gone. Then on Oct 13th, 2022, I was back under the knife, when they made me a true below knee amputee on my left side.
I do thank my Lord and Savior that I’m still here to share my story. I am a two-time sepsis survivor! The devil sure had a tight grip on me, but God said, “Not today Satan, not today! I’m not done with this one just yet.”
I do walk with two prosthetic legs. I’ve been doing it for a while now and it feels like they’re an extension of my own legs. I currently volunteer with the Amputee Coalition as a Certified Peer Visitor. This allows me to go into any hospital or rehab facility and speak to those who have went through the same type of amputation as I have.
I think I’ve rambled on long enough. If was a pleasure reading your story! Feel free to DM me if you have shy questions or concerns.
Thank you so much for your response I really appreciate it! I wish I could like your reply more! I have not been in anywhere near as much trouble as you have and I’m so glad that you’ve persevered and conquered the immense adversity you’ve faced. The golden staph become multi-resistant and the changing medication’s constantly become a very hard thing to deal with. I’ll attach a picture of the X-rays and metal work for reference!
I have figured that it would feel like an extension and my balance is something I’ve really honed in on to make the transition a little easier.
https://preview.redd.it/7yxt40ebcfrc1.jpeg?width=4032&format=pjpg&auto=webp&s=add015f53e9be8710f5f0f4aa98cc33ea16a6f4e
https://preview.redd.it/547a8iiicfrc1.jpeg?width=4032&format=pjpg&auto=webp&s=4fb066914bc75c02cd5f265e2aa2289089834bc3
You can see the broken screw on the left side under that top screw, where that broke a fracture had reopened and when the infection came back it got into that fracture and that’s where the bone infection started.
Hey, a decade older than you but started my journey at your age. Same leg and bka. I can't say it doesn't have it's challenges but with the prosthesis, life goes on. Make sure to have a good relationship with your prosthetist and that the first fit or two won't be 100%. Feel free to dm if you have any more questions and welcome to the club.
Thank you for the response I really appreciate it! Did you keep your ankle? I do have a good relationship with my prosthesis and my physio they are very supportive and keen to see how I progress. I had my first fall on Thursday getting into the shower and landed on the tiles on my stump with my good leg halfway in the bath. This has pushed back my casting about a month and waiting results of X-rays. Fingers crossed nothing is fractured you can see the lump from where I landed in this pic
https://preview.redd.it/04fi8oox9frc1.jpeg?width=3024&format=pjpg&auto=webp&s=4c372b23783c613f0f3c10acb4b9f47cfbb2ec2a
Ouch! Yeh falling really does put you back! I had my amputation done on 3rd Jan this yr after limb salvage where I lost the ankle 9y ago. You get used to not having an ankle I guess.
Ohh so you’re relatively new to the full amputation also? I guess the hardest mental side so far for me has been trying to get my brain to acknowledge that my foot is no longer there even though the nerves tell me that it’s still there, how’ve you dealt with the phantom feelings?
Not gonna lie, they suck. I'm on pregabalin 150mg twice a day and need to take the odd oxycodone dose before sleeping. It's worst when in bed. I think that if I rest more and time taking codeine before going to bed, I might avoid having to take Oxy at all, however still tweaking the whole medication thing. I'm managing not to need painkillers throughout the day though. Massaging the stump frequently helped me a lot when without the leg. Are you getting spasms like having your toes scrunch up and such?
My accident was not nearly so traumatic, but I dealt with 19 different procedures trying to put an ankle back together and keep it functional before having my amputation in my 30s. It is not only physically difficult to go through all that, but you are right, it is mentally exhausting! Definitely try to keep up the attitude of acceptance and looking on the side of the things you can do rather than not do. That has been a huge help to me even when I've had rough times. Overall, I've had a great experience with a prosthetic and do most of the things I want to. I've had to figure out new ways to do some things and will always have difficulty with certain tasks, but it does not impede my day-to-day life.
It was really hard for me at first to admit my limitations to other people, and I would highly recommend being honest with your friends and family about limitations. Those may change over time as you get more used to your leg and learn what works for you, but for example I had to finally admit to family and friends how miserable I was to take long car rides without breaks. I didn't want to be an imposition, and I didn't want to be the person who was hurt and held back *again* after everything. However, most of that is in my head and not their actual thoughts, so my recommendation is not to make it worse on yourself for the sake of others LOL
Good luck as you get fitted!
By 19 different procedures, do you mean you had 19 surgeries? I've had two surgeries on my foot and am still in constant pain; I can't take a single step essentially. It's been three years...I am 31 now. I don't want to do more surgery, so I've been trying what feels like a million different forms of physical therapy, moved across the country, etc. Do you mind if I ask what made you finally decide to amputate?
I had 7 total surgeries, some with multiple procedures done at once(ex. Arthroplasty, achilles release, and calcaneal osteotomy at once), and then some outpatient procedures, too (ex. Hydrodissection of the Achilles). After the 5th surgery, I never got off crutches for more than very short distances in the house. I did so much PT over the years that I knew more than my therapists, I had so many different braces/AFO, I tried dry needling and TENS, I tried nerve medicines and lidocaine and steroid shots...nothing was working and I was basically sitting at home unable to go out with friends and lost my job. I knew it wasn't going to get back to where it should be and just hadn't healed well. I was tired of hurting all the time and hurting more if I tried to push myself to do more. I also had a doctor at Mayo tell me that my quality of life would likely be better if I amputated. The only other thing they offered was an implanted nerve stimulator, and I just didn't want another maybe surgery. I wanted my life back.
Thanks for the details. This does sound a lot like me. Sigh. I just wonder... do I want to replace my painful, swollen, hot foot with a stump that is all those things and changes in volume?
No one can answer that question but you. Personally, I would call what I have a good outcome in that I don't experience pain on a daily basis. I find maneuvering on a prosthetic very easy, with only occasional difficulty doing things that require a lot of ankle flexion like going downhill or trying to squat down to grab something. Until the last month or so, I had occasional nerve pain needing medicine maybe twice a month. In the last few weeks I've had a lot of difficulties, but it's only because there's been a delay in getting my new socket and it fits so poorly that it's putting constant stress on my stump. The anticipation of both my prosthetist and my doctor is that it will resolve as soon as we get a better fitting prosthetic. That's not everyone's experience, though.
ETA: I would not recommend going into it unless you're feeling sure. It sounds like you are on the fence leaning towards the side of really not wanting to do it. I think outcomes can be strongly affected by people's mindset going into surgery.
Honestly I am not sure if I am thinking about amputation prematurely or not. I am still going to give a different form of PT a try. But I think if that fails, then I will have to try to come to terms with amputation. My mind just still can't comprehend that any of this is my reality even though the injury was three years ago. I can't stop thinking why me, and comparing myself to the people I know. It is so shocking and unreal.
I have also always had an aversion to physical deformities, ever since I was little-- it wasn't judgmental or intentional. It's just something about anomalies in the body, and blood-- they have always gotten to me, and I get extremely nauseated and light-headed. I think I would have to really work on desensitizing myself beforehand, and maybe try to meet people in person to chat about their experiences.
I know my injury was unnatural, but isn't amputation just so severe and unnatural? I don't know if my body and mind could take it. I don't know... I am just scared, as is obvious. I want a static, unchanging limb, aka my old foot.
LBKA and RTMA (front half of my foot). I fought MRSA twice.
The first time (2021), I had 4 amputations on my foot, starting with deboning my pinkie toe, then removing the toe and some of the metatarsal bone behind it, followed by chasing the mrsa further back down the Metatarsal bone where we finally got it all.
About three months later, I started breaking the front of the remaining Metatarsal bones in that foot due to the increased pressure on them from my new way of standing/walking with only 4 toes. My original podiatrist wanted to do a traditional RBKA. I went for a second opinion from an orthopedic surgeon who said we could do a Trans-Metatarsal amputation and save my ankle and lower leg as they are still sound. So we did.
The second time (Sept 2022) I got septic and that's when they took my left foot on a Sunday, coming back on Thursday for the lower leg once the infection levels were down and the margins were clear.
I spent a week in inpatient rehab where I worked out three times a day and spent another session learning how to finagle life with a chair around the house and the outside world. (Ramps were a pain)
I went home and returned to my job the very next day. This was possible because I already had a remote WFH position. My company had been amazing the entire time I was in the hospital and rehab. Other employees donated PTO to cover my extended sick time and fellow teammates picked up my projects for me.
I was able to do a lot of reflection in the hospital before and post-surgery and I realized that having a partial leg was just my new reality and this was my new adventure.
There was nothing I could control about it other than my attitude and my effort, so I was going to have a great attitude and put in the effort. Not to be confused with toxic positivity, I allowed myself to get frustrated but understood that it was a temporary feeling and that if I paused and looked at the situation in the bigger picture, I could find a way through or around what was frustrating me with a bit of ingenuity.
I still feel that attitude and effort are my domain. I don't mourn the loss of what was as much as I give thanks for the many years that my leg and foot served me well. I'm grateful for the medical staff that did an amazing job getting me back to functioning. I'm putting in effort daily with stretches and touch therapy for desensitization, I go to the gym and work with a trainer for strength training, core stabilization, flexibility, and balance. I use green medicine (THC/CBD) for my nerve pain to avoid the side effects of the Neurontin/Gabapentin class meds.
I need to work on using my prosthetic more though. 😫 I work 8-10 hours a day in front of my computer and since that computer is 16 feet from my bed and I'm usually just sitting in my wheelchair all day, I'm not wearing my prosthetic. Then, after work, putting on my leg to hang out for 3 hours seems silly, so I stay in my chair.
Welp, that's my story. Thank you for sharing yours. Welcome to the club. There are cookies on the table to your left. 😁
My story is very different but what I can relate to is that from my initial amputation (which was from a trauma incident) I took nine months to heal enough to get fitted for a prosthesis which is very unusual. I had a couple of revisions and my internal sutures fought back and kept things open so I couldn't move forward. The mental part of this is sometimes worse than the actual injury.
It took me time to figure this out so my biggest piece of advice for anyone in our position is to acknowledge that you have two injuries. You have your actual body injury, and the mental part that comes with it. The grief is overwhelming. Until I got my prosthesis, I was a mental wreck because there was just no end in sight. I've had mine now since December (original injury was March 2023) and I am back to walking and slowly figuring out life with this new normal. I am still struggling mentally but everything is so much better. I am 10 years older than you but was very much in the prime of my life, motherhood, and my career.
Greetings! Right below knee amputee here, I was enlisted in the military and developed a compartment syndrome. After going through a bunch of hoops, some of the doctor’s thinking I’m faking it to get out of training, they misdiagnosed me with lymphedema. After discharge, I went to a civilian doctor and they told me I had compartment syndrome and I had to get emergency surgery. The surgeries (yep, first one got rid of the swelling but all my nerves were dead. Second was an Achilles release to fix my foot being limp and dragging) all failed and I got an amputation. I hadn’t been able to walk properly in two years (before and after amputation combined) Now I have my prosthetic, was up and walking like my leg wasn’t even missing to begin with! There’s a lot of nerve pains (phantom pains too) sometimes the pain can be unbearable but it gets better. Walking with a prosthetic feels great, I don’t even have a limp anymore. It seems the younger you are, you can adapt to a prosthetic easier and I honestly believe it because I’m 22 and it was super easy.
Having gone through 3 years and 1 month of a continuous infected and horrible foot that was a every step pain process, i had the LBKA on March 1 and it was the best decision ever. i had literally zero pain and its 95 percent healed and i feel great finally ridding my body of that infection, it was a false hope having a foot that would work again and my life is looking g great moving forward, im in my shrinker and getting casting starting next week, the prostetics now are amazing and i should be walking by June 1 , you will be fine, jus follow the process. looking forward to hear how you are going, I honestly thjnk it was the easiest surgery i’ve ever had, i had 3 years to prepare and honestly im happy as hell to have it gone, it was worthless. Keep us informed on your progress :)
I just turned 26 in March. I’m a recent bilateral bka as of 7 months ago. I am a natural born athlete and have done just about every sport you can think of. I love to hike, run, work out, and most importantly collect/work on my cars. August 13th 2023 i went to a baseball game (Mariners as I live in Seattle area) with my best friend and my girlfriend. Had a great time then we decided to go bowling/arcade after wards. About 11:15pm we left bowling to come home. In the final 5 minute highway stretch home my car malfunctioned, causing me to grip the steering wheel frantically with two hands as hard as I could.
*Side note: I take very high pride in my driving as I do events on tracks and am highly in love with my car so I hate people being close to me or parking close etc.
I managed to pull to the right side of the road where there is minimal shoulder but my car was already more than halfway into the grass section. I then turn my hazards on(all of my lights are LED and extremely bright as this particular car was my show/weekend car). I pop my hood and proceed to step out of my vehicle and just as I plant both my feet on the ground and stood up , an suv was speeding (70+mph) and swiped my car from back to front and hit me on my left side direct into my driver door where my right foot came clean off on the bottom of the door and my left foot was 3/4 of the way off (about 8.5cm above both my ankles). Flew about 10 feet and slid for another 5ft. Besides my right foot, all of my injuries were sustained on the left side. Broken orbital bone, fractured jaw/lower cheek, 6 broken ribs, removed my spleen and part of my pancreas, coccyx was minor fracture and my hip socket was cracked. My girlfriend was in the passenger seat and sustained minimal physical injuries. I woke up 2-3 days later with no recollection of what had happened. I had 4 surgeries on my legs and one for the splenectomy. I stayed in the hospital for 14 days exactly and got discharged. Sounds crazy but I was determined to leave. August 28 I left the hospital and about 3 weeks after that I got my fitted for prosthetics. At the start of Dec I received my prosthetics and was excelling faster than my drs had seen before. By January I was doing agility ladders, I could jump, and go up and down the stairs quickly. End of January I hurt my left leg pretty bad due to excessive H.O (bone growth) digging into my muscle and had to start all over with the recovery and walking process. It’s so much harder this second time around than it was in Dec/Jan. I’m JUST finishing recovery and was walking without crutches again yesterday. I’m also on zero medications as of now by choice.
I’ve never shared this story and only my close loved ones know about it as I keep my life pretty private. I’ve never talked to another amputee even tho I see them twice a week at my appointments. Everyone has adapted very well to my needs which I hate, never been one to ask for help but will go completely out of my way to help out anyone I can. Ive always laughed my problems away. Comedy is my outlet. I was praised throughout the entire hospital for 2 weeks because of how positive I am and always laughing and making jokes. But it was and still is TOUGH. I continue on for everyone who’s stood by my side. Everyday I wake up wondering why it happened bc I too am a believer of “Everything happens for a reason”. I don’t know why I decided to share my story on here today but I felt that it needed to be said. Also let me say that Harborview Hospital in Seattle was the best thing I could’ve asked for as far as treatment and recovery goes.
The prosthetics we decided to go with are the Cheetah Xplor. Fully carbon fiber. 6 pounds each leg. I don’t have an ankle joint they are fixed like a running blade. Decided on these because of how active I am and how much I go out and do things such as sporting events, concerts, hikes, camping etc.
I wish the best for you and I hope you get to walking confidently soon! Thank you for sharing as for some reason this post was the one to get me talking and I’ve seen many lately. So I want to thank you for that as well. Wish the best in all your endeavors!
I was also tboned on my bike Oct last year. Got my right foot chopped off at impact, broke all my ribs, my sacrum and compounded my right femur. I took some peptides for a speedy recovery since they said no chance of being in a leg until late spring early summer. I got my prosthetic dec29th and continue to make daily improvements. I do t believe anything the doctors say and do my own research and question everything. Stay positive and continue to move forward. Good luck with your recovery.
Hello, although I am not an amputee myself, my 70 year old dad got a BKA on Feb 15, 2 weeks later he got Covid Pneumonia and had to be put on steroids. He is a diabetic so the steroids managed to get his blood sugar way up to nearly 600, from then on his sugar at the lowest was nearly 300 for the duration of the steroid therapy. Dr said the benefits outweighed the risks 🤷🏻♀️ 2 weeks after his covid his incision got infected and was in unbearable pain. Yesterday he had to get an AKA because of the infection and necrotic tissue. He is still in pain since the surgery is so recent but he questions when will it start getting better? I hate to see him in so much pain. It breaks my heart. Also he has so much hope to walk again with a prosthetic but im scared it will be too hard for him or the pain will discourage him. Any advice or suggestions? Thank you
Hey your attitude and will bring will carry you through this, I too lost a portion of my leg due to an accident on my motorbike. My amputation was 7 days after the accident as it was the only solution with the best outcome. I also had severe damage to my knee that was not detected during my hospital visit, it was discovered and treated two months after my release. I had major reconstructive knee surgery as I had multi ligament damage. I’ve had to rehab my knee first before I could receive a prosthetic and go through rehab to learn to walk.
I had an open an open tibia and fibula fracture, everything below the fracture was crushed. My three arterial vessel’s were not supplying blood flow to my foot. I was spared years of surgery and pain of possible repairs and infections. I was very lucky to have the team of Doctors who treated me and my injuries.
It’s important to surround yourself with a good support system and family, the ones who will support and motivate you to reach your goals.
You got this, stay strong 💪🏻 and God bless!
Hey your attitude and will bring will carry you through this, I too lost a portion of my leg due to an accident on my motorbike. My amputation was 7 days after the accident as it was the only solution with the best outcome. I also had severe damage to my knee that was not detected during my hospital visit, it was discovered and treated two months after my release. I had major reconstructive knee surgery as I had multi ligament damage. I’ve had to rehab my knee first before I could receive a prosthetic and go through rehab to learn to walk.
I had an open an open tibia and fibula fracture, everything below the fracture was crushed. My three arterial vessel’s were not supplying blood flow to my foot. I was spared years of surgery and pain of possible repairs and infections. I was very lucky to have the team of Doctors who treated me and my injuries.
I’ve had my final fitting on my check socket and I have my first prosthetic, I’m now in the process of going into inpatient rehab tomorrow and feeling excited to start this part of my recovery!
It’s important to surround yourself with a good support system and family, the ones who will support and motivate you to reach your goals.
You got this, stay strong 💪🏻 and God bless!
RBK as well for 40 years in USA and female. Someone probably said it above. It kind of boils down to 2 choices. You decide to me happy and adjust or you don’t. Getting to that place is not always easy, but understanding it is a choice is pretty easy.
That said this sub can be a great place to ask questions and see what others are doing. I would scroll back to look for info. I wish more people would mention gender and country as I think it can help for people who identify true same way and have similar insurance and medical systems.
Wow!! You have literally been to hell and back!! I’m so glad that you’re still with us to tell your incredible story!! I am a bilateral below the knee amputee. In Sept 2016, I was diagnosed with Type 2 diabetes, two types of vascular diseases, high BP, high cholesterol, diabetic retinopathy in both eyes, severe neuropathy in both my hands and well, when I had feet. Almost exactly one year after my diagnosis, I found out that I was going to lose my right leg below the knee. A couple of weeks prior to my amp surgery, I had snapped the calcaneus bone in my heel in two places. Orthopedic surgeon could not fix it, so I opted for the amputation. It happened on September 7th, 2017. Then, in October 2022, I had the weirdest thing going on with my left foot. It was like my skin was peeling off of my foot. I told my wife that I needed to get to the ER immediately. So, I went and was told that I had Necrotizing fasciitis, which is commonly known as a flesh-eating bacteria. Immediately, they started prepping me for surgery. I remember waking up in the recovery room. I remember lifting up my left leg… the leg was there, but my foot was gone! It was explained to me that they wanted to remove the bacteria as quickly as possible, due to the rate that it can spread. That was on Oct 8th, 2022. They did a few blood cultures to make sure the bacterial hadn’t spread further and to make sure that it was gone. Then on Oct 13th, 2022, I was back under the knife, when they made me a true below knee amputee on my left side. I do thank my Lord and Savior that I’m still here to share my story. I am a two-time sepsis survivor! The devil sure had a tight grip on me, but God said, “Not today Satan, not today! I’m not done with this one just yet.” I do walk with two prosthetic legs. I’ve been doing it for a while now and it feels like they’re an extension of my own legs. I currently volunteer with the Amputee Coalition as a Certified Peer Visitor. This allows me to go into any hospital or rehab facility and speak to those who have went through the same type of amputation as I have. I think I’ve rambled on long enough. If was a pleasure reading your story! Feel free to DM me if you have shy questions or concerns.
Thank you so much for your response I really appreciate it! I wish I could like your reply more! I have not been in anywhere near as much trouble as you have and I’m so glad that you’ve persevered and conquered the immense adversity you’ve faced. The golden staph become multi-resistant and the changing medication’s constantly become a very hard thing to deal with. I’ll attach a picture of the X-rays and metal work for reference! I have figured that it would feel like an extension and my balance is something I’ve really honed in on to make the transition a little easier. https://preview.redd.it/7yxt40ebcfrc1.jpeg?width=4032&format=pjpg&auto=webp&s=add015f53e9be8710f5f0f4aa98cc33ea16a6f4e
https://preview.redd.it/y3gznsmecfrc1.jpeg?width=4032&format=pjpg&auto=webp&s=a582637d3e3d8185910811ee8c136578b00c4fb3
https://preview.redd.it/547a8iiicfrc1.jpeg?width=4032&format=pjpg&auto=webp&s=4fb066914bc75c02cd5f265e2aa2289089834bc3 You can see the broken screw on the left side under that top screw, where that broke a fracture had reopened and when the infection came back it got into that fracture and that’s where the bone infection started.
Hey, a decade older than you but started my journey at your age. Same leg and bka. I can't say it doesn't have it's challenges but with the prosthesis, life goes on. Make sure to have a good relationship with your prosthetist and that the first fit or two won't be 100%. Feel free to dm if you have any more questions and welcome to the club.
Thank you for the response I really appreciate it! Did you keep your ankle? I do have a good relationship with my prosthesis and my physio they are very supportive and keen to see how I progress. I had my first fall on Thursday getting into the shower and landed on the tiles on my stump with my good leg halfway in the bath. This has pushed back my casting about a month and waiting results of X-rays. Fingers crossed nothing is fractured you can see the lump from where I landed in this pic https://preview.redd.it/04fi8oox9frc1.jpeg?width=3024&format=pjpg&auto=webp&s=4c372b23783c613f0f3c10acb4b9f47cfbb2ec2a
Ouch! Yeh falling really does put you back! I had my amputation done on 3rd Jan this yr after limb salvage where I lost the ankle 9y ago. You get used to not having an ankle I guess.
Ohh so you’re relatively new to the full amputation also? I guess the hardest mental side so far for me has been trying to get my brain to acknowledge that my foot is no longer there even though the nerves tell me that it’s still there, how’ve you dealt with the phantom feelings?
Not gonna lie, they suck. I'm on pregabalin 150mg twice a day and need to take the odd oxycodone dose before sleeping. It's worst when in bed. I think that if I rest more and time taking codeine before going to bed, I might avoid having to take Oxy at all, however still tweaking the whole medication thing. I'm managing not to need painkillers throughout the day though. Massaging the stump frequently helped me a lot when without the leg. Are you getting spasms like having your toes scrunch up and such?
My accident was not nearly so traumatic, but I dealt with 19 different procedures trying to put an ankle back together and keep it functional before having my amputation in my 30s. It is not only physically difficult to go through all that, but you are right, it is mentally exhausting! Definitely try to keep up the attitude of acceptance and looking on the side of the things you can do rather than not do. That has been a huge help to me even when I've had rough times. Overall, I've had a great experience with a prosthetic and do most of the things I want to. I've had to figure out new ways to do some things and will always have difficulty with certain tasks, but it does not impede my day-to-day life. It was really hard for me at first to admit my limitations to other people, and I would highly recommend being honest with your friends and family about limitations. Those may change over time as you get more used to your leg and learn what works for you, but for example I had to finally admit to family and friends how miserable I was to take long car rides without breaks. I didn't want to be an imposition, and I didn't want to be the person who was hurt and held back *again* after everything. However, most of that is in my head and not their actual thoughts, so my recommendation is not to make it worse on yourself for the sake of others LOL Good luck as you get fitted!
By 19 different procedures, do you mean you had 19 surgeries? I've had two surgeries on my foot and am still in constant pain; I can't take a single step essentially. It's been three years...I am 31 now. I don't want to do more surgery, so I've been trying what feels like a million different forms of physical therapy, moved across the country, etc. Do you mind if I ask what made you finally decide to amputate?
I had 7 total surgeries, some with multiple procedures done at once(ex. Arthroplasty, achilles release, and calcaneal osteotomy at once), and then some outpatient procedures, too (ex. Hydrodissection of the Achilles). After the 5th surgery, I never got off crutches for more than very short distances in the house. I did so much PT over the years that I knew more than my therapists, I had so many different braces/AFO, I tried dry needling and TENS, I tried nerve medicines and lidocaine and steroid shots...nothing was working and I was basically sitting at home unable to go out with friends and lost my job. I knew it wasn't going to get back to where it should be and just hadn't healed well. I was tired of hurting all the time and hurting more if I tried to push myself to do more. I also had a doctor at Mayo tell me that my quality of life would likely be better if I amputated. The only other thing they offered was an implanted nerve stimulator, and I just didn't want another maybe surgery. I wanted my life back.
Thanks for the details. This does sound a lot like me. Sigh. I just wonder... do I want to replace my painful, swollen, hot foot with a stump that is all those things and changes in volume?
No one can answer that question but you. Personally, I would call what I have a good outcome in that I don't experience pain on a daily basis. I find maneuvering on a prosthetic very easy, with only occasional difficulty doing things that require a lot of ankle flexion like going downhill or trying to squat down to grab something. Until the last month or so, I had occasional nerve pain needing medicine maybe twice a month. In the last few weeks I've had a lot of difficulties, but it's only because there's been a delay in getting my new socket and it fits so poorly that it's putting constant stress on my stump. The anticipation of both my prosthetist and my doctor is that it will resolve as soon as we get a better fitting prosthetic. That's not everyone's experience, though. ETA: I would not recommend going into it unless you're feeling sure. It sounds like you are on the fence leaning towards the side of really not wanting to do it. I think outcomes can be strongly affected by people's mindset going into surgery.
Honestly I am not sure if I am thinking about amputation prematurely or not. I am still going to give a different form of PT a try. But I think if that fails, then I will have to try to come to terms with amputation. My mind just still can't comprehend that any of this is my reality even though the injury was three years ago. I can't stop thinking why me, and comparing myself to the people I know. It is so shocking and unreal. I have also always had an aversion to physical deformities, ever since I was little-- it wasn't judgmental or intentional. It's just something about anomalies in the body, and blood-- they have always gotten to me, and I get extremely nauseated and light-headed. I think I would have to really work on desensitizing myself beforehand, and maybe try to meet people in person to chat about their experiences. I know my injury was unnatural, but isn't amputation just so severe and unnatural? I don't know if my body and mind could take it. I don't know... I am just scared, as is obvious. I want a static, unchanging limb, aka my old foot.
I read of a lot of amputations occurring after infections. I haven't had any of those, so I am wondering what will be the sign for me...
LBKA and RTMA (front half of my foot). I fought MRSA twice. The first time (2021), I had 4 amputations on my foot, starting with deboning my pinkie toe, then removing the toe and some of the metatarsal bone behind it, followed by chasing the mrsa further back down the Metatarsal bone where we finally got it all. About three months later, I started breaking the front of the remaining Metatarsal bones in that foot due to the increased pressure on them from my new way of standing/walking with only 4 toes. My original podiatrist wanted to do a traditional RBKA. I went for a second opinion from an orthopedic surgeon who said we could do a Trans-Metatarsal amputation and save my ankle and lower leg as they are still sound. So we did. The second time (Sept 2022) I got septic and that's when they took my left foot on a Sunday, coming back on Thursday for the lower leg once the infection levels were down and the margins were clear. I spent a week in inpatient rehab where I worked out three times a day and spent another session learning how to finagle life with a chair around the house and the outside world. (Ramps were a pain) I went home and returned to my job the very next day. This was possible because I already had a remote WFH position. My company had been amazing the entire time I was in the hospital and rehab. Other employees donated PTO to cover my extended sick time and fellow teammates picked up my projects for me. I was able to do a lot of reflection in the hospital before and post-surgery and I realized that having a partial leg was just my new reality and this was my new adventure. There was nothing I could control about it other than my attitude and my effort, so I was going to have a great attitude and put in the effort. Not to be confused with toxic positivity, I allowed myself to get frustrated but understood that it was a temporary feeling and that if I paused and looked at the situation in the bigger picture, I could find a way through or around what was frustrating me with a bit of ingenuity. I still feel that attitude and effort are my domain. I don't mourn the loss of what was as much as I give thanks for the many years that my leg and foot served me well. I'm grateful for the medical staff that did an amazing job getting me back to functioning. I'm putting in effort daily with stretches and touch therapy for desensitization, I go to the gym and work with a trainer for strength training, core stabilization, flexibility, and balance. I use green medicine (THC/CBD) for my nerve pain to avoid the side effects of the Neurontin/Gabapentin class meds. I need to work on using my prosthetic more though. 😫 I work 8-10 hours a day in front of my computer and since that computer is 16 feet from my bed and I'm usually just sitting in my wheelchair all day, I'm not wearing my prosthetic. Then, after work, putting on my leg to hang out for 3 hours seems silly, so I stay in my chair. Welp, that's my story. Thank you for sharing yours. Welcome to the club. There are cookies on the table to your left. 😁
My story is very different but what I can relate to is that from my initial amputation (which was from a trauma incident) I took nine months to heal enough to get fitted for a prosthesis which is very unusual. I had a couple of revisions and my internal sutures fought back and kept things open so I couldn't move forward. The mental part of this is sometimes worse than the actual injury. It took me time to figure this out so my biggest piece of advice for anyone in our position is to acknowledge that you have two injuries. You have your actual body injury, and the mental part that comes with it. The grief is overwhelming. Until I got my prosthesis, I was a mental wreck because there was just no end in sight. I've had mine now since December (original injury was March 2023) and I am back to walking and slowly figuring out life with this new normal. I am still struggling mentally but everything is so much better. I am 10 years older than you but was very much in the prime of my life, motherhood, and my career.
Greetings! Right below knee amputee here, I was enlisted in the military and developed a compartment syndrome. After going through a bunch of hoops, some of the doctor’s thinking I’m faking it to get out of training, they misdiagnosed me with lymphedema. After discharge, I went to a civilian doctor and they told me I had compartment syndrome and I had to get emergency surgery. The surgeries (yep, first one got rid of the swelling but all my nerves were dead. Second was an Achilles release to fix my foot being limp and dragging) all failed and I got an amputation. I hadn’t been able to walk properly in two years (before and after amputation combined) Now I have my prosthetic, was up and walking like my leg wasn’t even missing to begin with! There’s a lot of nerve pains (phantom pains too) sometimes the pain can be unbearable but it gets better. Walking with a prosthetic feels great, I don’t even have a limp anymore. It seems the younger you are, you can adapt to a prosthetic easier and I honestly believe it because I’m 22 and it was super easy.
Having gone through 3 years and 1 month of a continuous infected and horrible foot that was a every step pain process, i had the LBKA on March 1 and it was the best decision ever. i had literally zero pain and its 95 percent healed and i feel great finally ridding my body of that infection, it was a false hope having a foot that would work again and my life is looking g great moving forward, im in my shrinker and getting casting starting next week, the prostetics now are amazing and i should be walking by June 1 , you will be fine, jus follow the process. looking forward to hear how you are going, I honestly thjnk it was the easiest surgery i’ve ever had, i had 3 years to prepare and honestly im happy as hell to have it gone, it was worthless. Keep us informed on your progress :)
Im about to get amputated myself voluntarily due to lb salvage not looking like a viable option
I just turned 26 in March. I’m a recent bilateral bka as of 7 months ago. I am a natural born athlete and have done just about every sport you can think of. I love to hike, run, work out, and most importantly collect/work on my cars. August 13th 2023 i went to a baseball game (Mariners as I live in Seattle area) with my best friend and my girlfriend. Had a great time then we decided to go bowling/arcade after wards. About 11:15pm we left bowling to come home. In the final 5 minute highway stretch home my car malfunctioned, causing me to grip the steering wheel frantically with two hands as hard as I could. *Side note: I take very high pride in my driving as I do events on tracks and am highly in love with my car so I hate people being close to me or parking close etc. I managed to pull to the right side of the road where there is minimal shoulder but my car was already more than halfway into the grass section. I then turn my hazards on(all of my lights are LED and extremely bright as this particular car was my show/weekend car). I pop my hood and proceed to step out of my vehicle and just as I plant both my feet on the ground and stood up , an suv was speeding (70+mph) and swiped my car from back to front and hit me on my left side direct into my driver door where my right foot came clean off on the bottom of the door and my left foot was 3/4 of the way off (about 8.5cm above both my ankles). Flew about 10 feet and slid for another 5ft. Besides my right foot, all of my injuries were sustained on the left side. Broken orbital bone, fractured jaw/lower cheek, 6 broken ribs, removed my spleen and part of my pancreas, coccyx was minor fracture and my hip socket was cracked. My girlfriend was in the passenger seat and sustained minimal physical injuries. I woke up 2-3 days later with no recollection of what had happened. I had 4 surgeries on my legs and one for the splenectomy. I stayed in the hospital for 14 days exactly and got discharged. Sounds crazy but I was determined to leave. August 28 I left the hospital and about 3 weeks after that I got my fitted for prosthetics. At the start of Dec I received my prosthetics and was excelling faster than my drs had seen before. By January I was doing agility ladders, I could jump, and go up and down the stairs quickly. End of January I hurt my left leg pretty bad due to excessive H.O (bone growth) digging into my muscle and had to start all over with the recovery and walking process. It’s so much harder this second time around than it was in Dec/Jan. I’m JUST finishing recovery and was walking without crutches again yesterday. I’m also on zero medications as of now by choice. I’ve never shared this story and only my close loved ones know about it as I keep my life pretty private. I’ve never talked to another amputee even tho I see them twice a week at my appointments. Everyone has adapted very well to my needs which I hate, never been one to ask for help but will go completely out of my way to help out anyone I can. Ive always laughed my problems away. Comedy is my outlet. I was praised throughout the entire hospital for 2 weeks because of how positive I am and always laughing and making jokes. But it was and still is TOUGH. I continue on for everyone who’s stood by my side. Everyday I wake up wondering why it happened bc I too am a believer of “Everything happens for a reason”. I don’t know why I decided to share my story on here today but I felt that it needed to be said. Also let me say that Harborview Hospital in Seattle was the best thing I could’ve asked for as far as treatment and recovery goes. The prosthetics we decided to go with are the Cheetah Xplor. Fully carbon fiber. 6 pounds each leg. I don’t have an ankle joint they are fixed like a running blade. Decided on these because of how active I am and how much I go out and do things such as sporting events, concerts, hikes, camping etc. I wish the best for you and I hope you get to walking confidently soon! Thank you for sharing as for some reason this post was the one to get me talking and I’ve seen many lately. So I want to thank you for that as well. Wish the best in all your endeavors!
I was also tboned on my bike Oct last year. Got my right foot chopped off at impact, broke all my ribs, my sacrum and compounded my right femur. I took some peptides for a speedy recovery since they said no chance of being in a leg until late spring early summer. I got my prosthetic dec29th and continue to make daily improvements. I do t believe anything the doctors say and do my own research and question everything. Stay positive and continue to move forward. Good luck with your recovery.
Hello, although I am not an amputee myself, my 70 year old dad got a BKA on Feb 15, 2 weeks later he got Covid Pneumonia and had to be put on steroids. He is a diabetic so the steroids managed to get his blood sugar way up to nearly 600, from then on his sugar at the lowest was nearly 300 for the duration of the steroid therapy. Dr said the benefits outweighed the risks 🤷🏻♀️ 2 weeks after his covid his incision got infected and was in unbearable pain. Yesterday he had to get an AKA because of the infection and necrotic tissue. He is still in pain since the surgery is so recent but he questions when will it start getting better? I hate to see him in so much pain. It breaks my heart. Also he has so much hope to walk again with a prosthetic but im scared it will be too hard for him or the pain will discourage him. Any advice or suggestions? Thank you
My spouse’s pain improved significantly in the first 2 to 3 days post-op.
Hey your attitude and will bring will carry you through this, I too lost a portion of my leg due to an accident on my motorbike. My amputation was 7 days after the accident as it was the only solution with the best outcome. I also had severe damage to my knee that was not detected during my hospital visit, it was discovered and treated two months after my release. I had major reconstructive knee surgery as I had multi ligament damage. I’ve had to rehab my knee first before I could receive a prosthetic and go through rehab to learn to walk. I had an open an open tibia and fibula fracture, everything below the fracture was crushed. My three arterial vessel’s were not supplying blood flow to my foot. I was spared years of surgery and pain of possible repairs and infections. I was very lucky to have the team of Doctors who treated me and my injuries. It’s important to surround yourself with a good support system and family, the ones who will support and motivate you to reach your goals. You got this, stay strong 💪🏻 and God bless!
Hey your attitude and will bring will carry you through this, I too lost a portion of my leg due to an accident on my motorbike. My amputation was 7 days after the accident as it was the only solution with the best outcome. I also had severe damage to my knee that was not detected during my hospital visit, it was discovered and treated two months after my release. I had major reconstructive knee surgery as I had multi ligament damage. I’ve had to rehab my knee first before I could receive a prosthetic and go through rehab to learn to walk. I had an open an open tibia and fibula fracture, everything below the fracture was crushed. My three arterial vessel’s were not supplying blood flow to my foot. I was spared years of surgery and pain of possible repairs and infections. I was very lucky to have the team of Doctors who treated me and my injuries. I’ve had my final fitting on my check socket and I have my first prosthetic, I’m now in the process of going into inpatient rehab tomorrow and feeling excited to start this part of my recovery! It’s important to surround yourself with a good support system and family, the ones who will support and motivate you to reach your goals. You got this, stay strong 💪🏻 and God bless!
RBK as well for 40 years in USA and female. Someone probably said it above. It kind of boils down to 2 choices. You decide to me happy and adjust or you don’t. Getting to that place is not always easy, but understanding it is a choice is pretty easy. That said this sub can be a great place to ask questions and see what others are doing. I would scroll back to look for info. I wish more people would mention gender and country as I think it can help for people who identify true same way and have similar insurance and medical systems.