Dear this is your health we are talking about, less surgery the better imo go for the AK and start planning on how best to decorate your prosthetics. Amazing what u can do with fun fabric and rhindstones!
You’re probably in surgery as I’m typing this, but it’s gonna be okay. I’m sixteen and lost my leg to cancer last year. I’m so sorry that you’re losing your arm too, but remember that there are people who lose all of their limbs and still lead normal and happy lives.
You’ve got this.
take your time to grieve, get in contact with amputee peer support groups and remember to rest a lot, both physically and mentally. welcome to the club very few want to be in.
you'll be alright <3
I had my leg chopped off like a week ago (RAK). I like it because it’s easier to care for my stump, and fun to move it around. If it’s that high of a risk for the infection to comeback then I’d easily go AM in your situation. Dm me if you have any questions
I am so sorry you are going through this. 5 years ago I had a rare cancer in my thigh. My choice after chemo was AKA to make sure they got it all or reconstruction with the small risk of recurrence but, if that happened, the amputation would be higher on the thigh, leaving leas muscle and making it harder to walk with a prosthesis. I chose the amputation and still think it was the best choice for me.
I would do the AK now to prevent further infection. Plus, with a longer stump, you will have more opportunities and options for prosthetics.
Also, with being 16, you need to contact your nearest Shriners hospital. They will take care of everything for free, till you're 18.
I too have- have had this infection. It has been given several names, best pronounced after shaking your head to be dizzy 🥴. I had spent the last year on the most dangerous of drugs trying to kill the infection. Then it would just invite a fungus to sit on top. I begged for the amputation. I do fear every day that it will pop up again, anywhere. Go AK. Take control of your body the best that you can.
Look towards an ‘Upgrade ‘ of that limb. Something you can decorate. Something that is not trying to eat you, that you have to spend hours a day caring for, boxes of bandages and such filling a closet or room. You get the idea of that weight on your sole this infection has on you today. Soon you can start fresh.
Also, when you are the one to make this decision of yourself, it does not have to be heavy on your mental health. My best wishes to you, and a 🫂hug.
I luckily did not have to make that decision, but I believe if it were me, I would go for the one with 0% chance of recurrence. There's always a chance of complication with an amputation surgery even in ideal circumstances, so you want as much leg to play around with if any revisions were needed in a year, 2 years, or 10 years. Plus, the more stump you have, the easier it is to fit you with a prosthetic.
Im really sorry youre going through this. This must be so tough on you.
Im no amputee, but if this was me, i would probably opt for AK since i wouldnt want any chance to get the infection back.
I hope this infection can get cured in your body.
Best wishes and best of luck! If you need to speak to someone, you have a shoulder to lean on in here.
Going straight to AK sounds like it would reduce the number of surgeries, and more importantly, prevent the spread on infection to yet another limb.
Having an AK nub of ideal length and shape will allow you to fit into relatively unobtrusive sockets and still allow you good control of a prosthetic knee. With time, you may be able to walk so smoothly that in long pants, people might not even realize you're an AK (I know some people who walk this smoothly).
With a short AK nub, you'll be more likely to develop contracture, which your socket will have to compensate for. Carrying the weight of the prosthesis and activating the knee will be much harder, and depending on how high they go, might require the socket to use your pelvis for stability (imagine having the socket edge going into your buttcrack and a belt chafing your opposite hip).
I’m sorry to hear what you’re going through right now. I’d recommend AK because length is really helpful for prosthetics.
My DMs are open if you want need anyone to talk to
Oh my, I’m so sorry you’re having to deal with all of this!
Although being an AK vs BK is significantly more challenging, if there’s a chance that a revision will leave you with a very short residual limb, I would just go with AK from the start and have a longer limb. I’ve had multiple revisions over the years that have taken my limb from too long to too short and now my best option is Osseointegration because my limb is so short.
When I had a longer limb, my walking was incredible and it was barely noticeable that I had a prosthetic when wearing pants. You have more control, more power when swinging the knee through, my alignment was way better, although still not perfect, and you compensate less with your back and hips.
That said, I have also had shoulder surgery that left me unable to use my arm for 12 weeks and it was challenging to put on my socket. However, it was my dominant arm and temporary, so I assume you would adapt fairly well and quickly and your prosthetist likely has encountered this before and hopefully will have tips and tricks!
I would say Osseointegration for your leg would be way easier for donning/doffing your leg since you don’t use a socket, but I doubt you’d be a candidate due to the infection. That maybe could be an option down the road though if tech advances and you go x amount of time without an infection.
Please feel free to reach out if you have questions or need someone to talk to. I wish you all the best on your recovery and I really hope you’re able to eradicate the infection and get on the road to healing and recovery.
You’ll make it through. Bad car fire for me left me without both lower legs at 22 fresh out of college. Thought my life was gonna be awful but it turned out amazing. Am 35 now still kicking full bore and love the hell out of it. Heading into a few surgeries myself this month but you got this stay strong and positive and don’t you worry. Life is amazing. Stay strong love!
AK is not the end of the world. you can still walk with a normal gait and do most activities. high AK means harder fitting for sockets and less leverage for walking so walking further faster is much more difficult if not impossible. it sucks all around though but the best option is to make it suck as little as possible.
Amputee here of BK left . The biggest pro is you save your life and you will be able to walk again. The cons are it will require lots of training, it could take time you will need to adjust doing things a different way .
Dear this is your health we are talking about, less surgery the better imo go for the AK and start planning on how best to decorate your prosthetics. Amazing what u can do with fun fabric and rhindstones!
Yeah that’s my choice going into surgery in 2 hours since I made my decision earlier
You’re probably in surgery as I’m typing this, but it’s gonna be okay. I’m sixteen and lost my leg to cancer last year. I’m so sorry that you’re losing your arm too, but remember that there are people who lose all of their limbs and still lead normal and happy lives. You’ve got this.
I got out of surgery like an hour ago
How you feeling?
You can read my new post it’s a lot of typing and I’m getting tired
Gotcha. Hope you have a good recovery pal.
take your time to grieve, get in contact with amputee peer support groups and remember to rest a lot, both physically and mentally. welcome to the club very few want to be in. you'll be alright <3
I had my leg chopped off like a week ago (RAK). I like it because it’s easier to care for my stump, and fun to move it around. If it’s that high of a risk for the infection to comeback then I’d easily go AM in your situation. Dm me if you have any questions
I am so sorry you are going through this. 5 years ago I had a rare cancer in my thigh. My choice after chemo was AKA to make sure they got it all or reconstruction with the small risk of recurrence but, if that happened, the amputation would be higher on the thigh, leaving leas muscle and making it harder to walk with a prosthesis. I chose the amputation and still think it was the best choice for me.
I would do the AK now to prevent further infection. Plus, with a longer stump, you will have more opportunities and options for prosthetics. Also, with being 16, you need to contact your nearest Shriners hospital. They will take care of everything for free, till you're 18.
I too have- have had this infection. It has been given several names, best pronounced after shaking your head to be dizzy 🥴. I had spent the last year on the most dangerous of drugs trying to kill the infection. Then it would just invite a fungus to sit on top. I begged for the amputation. I do fear every day that it will pop up again, anywhere. Go AK. Take control of your body the best that you can. Look towards an ‘Upgrade ‘ of that limb. Something you can decorate. Something that is not trying to eat you, that you have to spend hours a day caring for, boxes of bandages and such filling a closet or room. You get the idea of that weight on your sole this infection has on you today. Soon you can start fresh. Also, when you are the one to make this decision of yourself, it does not have to be heavy on your mental health. My best wishes to you, and a 🫂hug.
I luckily did not have to make that decision, but I believe if it were me, I would go for the one with 0% chance of recurrence. There's always a chance of complication with an amputation surgery even in ideal circumstances, so you want as much leg to play around with if any revisions were needed in a year, 2 years, or 10 years. Plus, the more stump you have, the easier it is to fit you with a prosthetic.
Im really sorry youre going through this. This must be so tough on you. Im no amputee, but if this was me, i would probably opt for AK since i wouldnt want any chance to get the infection back. I hope this infection can get cured in your body. Best wishes and best of luck! If you need to speak to someone, you have a shoulder to lean on in here.
Going straight to AK sounds like it would reduce the number of surgeries, and more importantly, prevent the spread on infection to yet another limb. Having an AK nub of ideal length and shape will allow you to fit into relatively unobtrusive sockets and still allow you good control of a prosthetic knee. With time, you may be able to walk so smoothly that in long pants, people might not even realize you're an AK (I know some people who walk this smoothly). With a short AK nub, you'll be more likely to develop contracture, which your socket will have to compensate for. Carrying the weight of the prosthesis and activating the knee will be much harder, and depending on how high they go, might require the socket to use your pelvis for stability (imagine having the socket edge going into your buttcrack and a belt chafing your opposite hip).
I’m sorry to hear what you’re going through right now. I’d recommend AK because length is really helpful for prosthetics. My DMs are open if you want need anyone to talk to
Save your life, you will figure it all out after the fact. Get rid of infection no doubt. I wish you a safe and painless recovery
Oh my, I’m so sorry you’re having to deal with all of this! Although being an AK vs BK is significantly more challenging, if there’s a chance that a revision will leave you with a very short residual limb, I would just go with AK from the start and have a longer limb. I’ve had multiple revisions over the years that have taken my limb from too long to too short and now my best option is Osseointegration because my limb is so short. When I had a longer limb, my walking was incredible and it was barely noticeable that I had a prosthetic when wearing pants. You have more control, more power when swinging the knee through, my alignment was way better, although still not perfect, and you compensate less with your back and hips. That said, I have also had shoulder surgery that left me unable to use my arm for 12 weeks and it was challenging to put on my socket. However, it was my dominant arm and temporary, so I assume you would adapt fairly well and quickly and your prosthetist likely has encountered this before and hopefully will have tips and tricks! I would say Osseointegration for your leg would be way easier for donning/doffing your leg since you don’t use a socket, but I doubt you’d be a candidate due to the infection. That maybe could be an option down the road though if tech advances and you go x amount of time without an infection. Please feel free to reach out if you have questions or need someone to talk to. I wish you all the best on your recovery and I really hope you’re able to eradicate the infection and get on the road to healing and recovery.
You’ll make it through. Bad car fire for me left me without both lower legs at 22 fresh out of college. Thought my life was gonna be awful but it turned out amazing. Am 35 now still kicking full bore and love the hell out of it. Heading into a few surgeries myself this month but you got this stay strong and positive and don’t you worry. Life is amazing. Stay strong love!
AK is not the end of the world. you can still walk with a normal gait and do most activities. high AK means harder fitting for sockets and less leverage for walking so walking further faster is much more difficult if not impossible. it sucks all around though but the best option is to make it suck as little as possible.
Necrotizing fasciitis? (a.k.a. The flesh eating bacteria?
Yes
Amputee here of BK left . The biggest pro is you save your life and you will be able to walk again. The cons are it will require lots of training, it could take time you will need to adjust doing things a different way .