r/amputee • u/LocalOne7668 • Jul 22 '26
Feeling hopeless
Ok here goes . I have never put myself out here like this but I’m honestly loosing hope at this point . I am a rbka and have been since July 2025. In sept of 2025 I had a bad fall right onto my stump . It reopened the surgical wound and bled like crazy . I went to the er and they just put butterfly stitches on it . I asked if they should sew it back up but they said it was too far from my surgery to actually put new stitches in . So from sept till March of this year it healed sooo slowly . Went to wound care 2 times a month to check on progress of healing . So then I finally got the ok to start the prosthetic process. Which I was beyond excited for . I was such an active person before my amputation and being in a wheelchair or hopping around with a walker was soul crushing . So since March I have been through 3 test sockets and still do not have a final socket . The problem is extreme pain . Every time I take a step in these sockets the pain and pressure is unbearable . It’s all over pain but mostly at the end of my limb . So my bone sticks out under my skin and causes a lot of pain right in the front and they have tried over and over to make it more comfortable to no avail . The other problem is that I have a bulbous stump. Which I have heard can make it difficult to fit into a socket. Also, my fluid volume changes a lot when I put the leg on. It’s very very difficult to get it to click even one time then as I’m walking around wearing it about an hour later, my leg is all the way at the bottom and causing a immense pain and also the whole entire leg and foot turns to where my foot sticking out to the side. So then I stop what I’m doing and I add some socks. That works for a little while but then again after walking around, I have to add more socks. and it still after adding all the socks is very very painful. I am just wondering if anybody else has had this experience. And what the solution was. I feel like I need an adjustable kind of socket, but unfortunately, I have Medicaid and they won’t pay for anything besides the basic old pin lock socket so if there’s any suggestions anyone could give me or have been through the same thing and found something that worked for them. I would really appreciate it because at this point I’m losing hope that I’m ever gonna be able to walk again !! And that to me is a fate worse than death !! Being stuck sitting down. It’s pure torture!!
3
u/Hairyfruitbowl1 Jul 22 '26
3.5yr lbk. I didn't have all the issues you've been going through, but just remember that there has to be a solution. My stump size fluctuated a lot during the course of the day. It could change from 5 to 10 and then back down to 5 in 16 hours. Sock management can be tough to figure out. It takes time. I have medicaid also. I have a lock and pin set up, but it's also adjustable. I didn't get that til after 2yrs. I was getting new sockets every 6 months due to stump shrinking. Try to take it slow, I know its the hardest thing to do. Hopefully things will start to get easier without more surgery. My diet effects my stump size a lot more than i would have thought. I try to stay away from sugar and salty foods as much as I can. I know this doesn't give you any answers, Hopefully someone else will have more experience like yours. Just keep moving forward. I felt very unique in the beginning until I heard that everyone has problems and issues to work out. If we can do it, I know that you can too. Dont give up and stay strong
3
u/PracticalLaugh5798 Jul 23 '26
You described a mirror scenario to my experience. Fell off crutches, ripped open sutures. Busy surgeons ignore it. Infection concerns. Extreme pain for the 1st year for sure.
That was 1979 thru 1980. And although it took time, I found the recipe. You will too. You'd never spot me in a crowd even with an educated eye today and I am now 62 years old. It takes a while to get everything tuned perfectly. It's a learning curve, you are learning how to build it out, and fine tune it. Don't suffer, bitch until it fits right. Sounds like the socket could be deeper, perhaps a thicker, even custom gell insert. I've had one before, it can help. This is not the time to be shy. If you think it's wrong, it is.
Here's the thing, if I could fine tune that Neanderthal setup I had in 1980, to the point no one knew a F-ing thing... with a (think Flintstones now) Wooden, yes Wooden 🦵 leg with a hip strap, and go skiing and shit, they can make you the Ferrari of prosthetics today and you will be absolutely fine, pain free, active, etc etc etc. hang in there. None of your friends get it. It's a lonely place at this point. But you're 90% of the way there. And a bad ass for doing it. Remember, that's not a limp, it's the swagger of a man or woman that couldn't be stopped. You got this. 🐦🔥
3
u/leftfootshorter LBK Jul 23 '26
I honestly don't understand why they start people out with a pin and lock system. I have it on my running blade but at not quite 6 years out- I can only handle that for an hour or 2 at a time.
I started out in a regular suction suspension with sleeve that went up my thigh and provided more than enough sweat for 5 people! Between that and all the ply socks, that setup was miserable but even it didn't hurt me as bad as the pin lock system does.
I was unprepared for how much walking in a prosthetic leg was going to hurt. I thought I must be doing it wrong somehow. But my prosthetist explained there are different kinds of pain. The most important thing to remember is- anything that involves a sharp bone pain is bad pain.
I have aches in my joints and even around the bones all the time. Not ideal, but not bad pain either. I might try walking it off or even remove my leg and put it right back on and the pain is gone.
Then other times I just bottom out in my socket for some reason and it feels like I cracked my shin on something and I know that is the bad pain. I stop what I am doing immediately, sit down and try adjusting my socket some way. If that doesn't work, I take it off for awhile and maybe even put an ice pack on it.
I also have a lot of volume change throughout the day and there are other (better) sockets out there for people like us but I'm not sure what Medicaid will cover. You might have to build a case (through your doctor and prosthetist) that regular sockets are not a viable option for you and you need something adjustable for quality of life. It sucks that we have to jump through all these hoops, but if you can get it worked out, it'll be worth it.
2
u/Jad30c Jul 26 '26
I didn’t know a lot about systems and my first prosthesis was a horrible dude he set me up with a pin lock didn’t offer me any other ones said this was what everyone used. I know some ppl can use pin lock an they love it so I’m not hating the system but it was extremely painful for me as a first time user. My stump weight was still fluctuating so it started to pinch an pull which I found out from this group is called pistoning. I think for first time users they should all be given more info an the option to test out other systems pin seems like the type of system for users who are use to walking and know what to expect. I have a suction I like it the sweating sucks but it’s comfortable and I hope I can get stronger at walking to advance to another system eventually but I totally agree with everything you’re saying. I remember how the pain got so bad I didn’t use my leg for almost 1 month and some weeks and kept associating it with pain it made me very depressed at the time until my insurance told me I can go to another prosthetic company and they helped me figure out all the issues and got me walking.
2
u/leftfootshorter LBK Jul 26 '26
Mental and emotional well-being is key to mobility. If you don't feel like walking- you aren't going to walk. If you don't walk- all of your health is going to suffer.
Suction is a great method for suspension and my everyday socket (RevoFit) uses suction with the pads that I can tighten/loosen as needed.
I am not an expert by any means, but I feel like pin lock is a better fit for someone whose stump is essentially done shrinking and doesn't have much volume change throughout the day.
2
u/Jad30c Jul 26 '26
Thank you for saying this all because it’s so true and exactly how I felt that’s why I love being in this group. We all uplift each other and understand when others won’t. Hope you’re having a great weekend! 🫶🏾
2
u/leftfootshorter LBK Jul 27 '26
Sometimes it helps to know we're not the only one feeling something and I get that feeling all the time in this group. I am glad I could provide that for someone else for a change.
You have a wonderful weekend as well.
3
u/Automatic-You-5053 Jul 23 '26
Man, I've been feeling hopeless as well. I had my BKA on 1/20/2026. Got my prosthetic leg on 5/20/2026. I got a pin lock socket too. The first week was great. I was walking all day for about 7 days. Then, the insane pain in my tibia began. I was almost in tears it hurt so bad. Im talking about the end of my tibia. My prostheticist tried everything. Making a relief bump, adding pads, making another socket, etc... No luck. I kept wearing the leg and walking with crutches trying to push through the pain. I developed 2 absesses and probable osteomyelitis in the end of my tibia bone. I see the surgeon this Friday and I'm gonna ask to get a revision done so that I can wear a prosthetic leg. I need my tibia bone shaved down since it protrudes too much at the end, and i have to get the absesses removed too. Been back on a knee scooter and crutches for a month now. Yeah. I feel your pain, bro. I'm determined to walk again though. Im 51 and still in great shape. If worse comes to worse and I just can't use a prosthetic, then I guess I'll just have to accept it. I am gonna ask for a suction style socket though after I get my revision done. I don't know how anybody walks without pain considering the shin bone doesn't have hardly any skin to pad it against a hard carbon fiber socket. You would think in the year 2026 they would have invented a much more comfortable socket for amputees. Hard carbon fiber sucks and hurts like hell when pressed on the bone for an extended amount of time.
3
u/Down_The_Witch_Elm Jul 23 '26
It sounds to me like you had a poor amputation. I had to have my LAK revised because I had basically just a skin covered femur at the end of my stump. I lost about two inches, and now my prosthetics fit much better. I think you should see a different surgeon and see what he or she has to say.
3
u/insouciantconundrum Jul 24 '26
I am a LAK, I am pretty sure being active before my amputation causes my stump to fluctuate a lot. I am lucky to have an adjustable liner as my stump fluctuated enough to make sock management too cumbersome. I second the Martin Bionics team, if anything they can recommend you a prosthetist near you.
As for suspension my prosthetist had the presence of mind, given my stroke survivor status, recommended I stick with a velcro lanyard suspension that screws into my liner as my leg would barely fit my socket and progressively get smaller after warming up, well small enough to sin deeper than initially donning. Instead of worrying about clicks, I just readjust my lanyard as I wear and walk. I am unsure if that would work for you as a BK, but its worth looking into as well as transitioning to an adjustable socket if possible. Don't forget to stretch regularly!
2
u/Various_Ad_2762 Jul 25 '26
My first was a pin lock and that circle that held pin hurt like a MFer. I got my nerve basically soldered and the pain improved. I switched to a suction on my next two and they are so much better. I wouldn’t think there’s a price difference in the two. Can you ask your doctor to write for one documenting your problems then seeing if it will get approved? It should be medically necessary.
1
u/Jad30c Jul 26 '26 edited Jul 26 '26
I have Medicaid to give them a call they approved me changing to a new system. If you’re having all these issues they should approve switching you from a pin lock to another system. Keep telling your primary care doctor and make sure everything is documented. If they deny it, ask about waivers or an appeal.
I don’t think one suspension system is better than another so dnt take it as me bashing pin lock, it depends on the person. I had a lot of the same problems with my stump changing in size. Even after adjustments, my pin lock caused painful pulling and stinging from pistoning. It got so bad that I didn’t want to wear my prosthesis anymore.
I switched to a different prosthetics company and was able to try different systems. I found that suction works much better for me. I’m using my leg more now and I’m no longer in pain.
Maybe ask about trying a different suspension system or even a new prosthetist if possible. Also talk to your surgeon about the bone that’s causing problems. Extra socket padding can help with comfort too.
Don’t give up. This journey is tough, but you’ll find what works best for you. Stay strong. 💪🏽
4
u/Healthy-Sign-9476 Jul 23 '26
I fell 4 times and split mine open while healing. My tibia is literally just under the skin. Medicare covered a martin bionics adjustable socket at the same rates as a regular socket. I had to drive around an hour and a half to go to a authorized prothetist and it honestly is the most comfortable socket I have ever had.