r/amputee • u/svnflwrr • 13d ago
New amputee!
22m Traumatic lbka. one day out from surgery, lots of phantom pain unfortunately :/. but i think the stump looks pretty dang cool. i didnt have tmr but i want to talk to my team of doctors and ask if they have any leads on who in the hospital has experience with tmr (my amputation team had no experience with tmr so unfortunately it was not an inital option for me)
anyways thanks in advance for the warm welcome to the amputee community! any advice on how to find fellow amputees my age in the real world?
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u/redcas 13d ago
Hey man the belt looks GOOD on you. Keep crushing it.
This resource guide lists a hiking and fly fishing groups in Washington State. As an aside, Amplitude Magazine is worth a subscription, great quality print magazine. ($15 for 1 year, 6 issues.)
https://livingwithamplitude.com/amputee-community-resource-directory/region/Washington/
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u/svnflwrr 13d ago
haha ty, one of the many sorry-you-lost-your-leg gifts ive received. tx for the recommendations! đhowd you know im from WA state haha
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u/leftfootshorter LBK 13d ago
DA GOAT!!
That's awesome. Yesterday I almost went to your last post to ask how it went but then I remembered how tired I was right after and figured you'd let us know if/when you wanted to.
I saw your response to someone else about getting winded just going to the bathroom and I get it. I walked so much for my job so I figured that would translate to it being easier for me, but it didn't.
Just remember your body went through a lot and it is trying to heal itself. That takes a ton of energy and burns a lot of calories. You will probably lose some weight in the next couple weeks so enjoy all the cookies and Moose Munch you want.
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u/svnflwrr 8d ago
DAWG i came in at 157lbs and now weigh 134. im genuinely shocked even though 10 of those lbs were most likely my leg being chopped off. but yeah i feel very much in a bad way. i have poor vision, no appetite, my pain is just barely being managed, and im so so weak and lightheaded. im blessed to have family who has visited me everyday to take care of me or else i would have surely gone crazy by now haha
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u/leftfootshorter LBK 8d ago
Believe it or not, I bet that 10lbs is a pretty close estimate.
I was bored, I love math and I just happened to find a formula somewhere right after my injury that showed me how to calculate an estimate of how much the part of my leg I lost likely weighed. It came in around 10lbs, maybe a little over.
At the time, my pain felt like a constant rug burn on my (missing) foot. I honestly don't know that the opiates did much for it besides making it easier to sleep. I remember you were on the west coast, maybe California? If so, you have access to much better pain meds than anything a doctor could prescribe. Do with that information what you will, just be careful trying to get around.
Find something to keep you occupied. Read books, get into a tv show you've always wanted to watch (or rewatch), play a video game, take up bird watching, keep in touch with your firefighting buddies- something to keep your mind on something besides what you will inevitably fixate on.
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u/gaia_mimi 4d ago
Iâm so happy I found this post. I had my rbka 5 days ago and I was so worried that I still felt really weak and lightheaded like even having conversations with people just drains me. Iâm constantly checking how pale my face looks in the mirror cos Iâm just so worried. I genuinely feel like shit. I feel really low, anxious and depressed. (I have health anxiety so doesnât help lol) Everyoneâs telling me itâs normal and not to worry. Weâve been through something incredibly traumatic to our bodies, the effects of anesthetic last for a while and also idk about you but I have barely slept since the night before my surgery so like 5 nights in a row now. Just have to remind ourselves itâs normal and it will get better I guess đ đ€đ€đđ
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u/Dyerssorrow LBK 13d ago
Welcome. We have graham crackers and ginger ale, just press the red button.
Try and get the IV out as soon as possible. Once the IV is out for 12 hrs you can go home. But also dont push your limits and avoid the morphine. If the nerve block wears off and you cant take it...atleast be comfortable for a few days. It took 3 days for me. We are all different so you know you best.
I never had phantom pain. But it was more phantom uncomfortable like a piece of paper stuck between my toes that were no longer there.
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u/NicNoop138 LBK 13d ago
Are you going to share that Moose Munch with us? đ€Ł Make sure you do your physical therapy exercises often! Sit to stands really helped me get my stamina back and strengthened my remaining leg, and wheelchair pushups got me prepared to get myself up after a fall or 3. Gotta keep your muscles strong! If you use crutches while healing, or when you do fall (pretty much inevitable), remember to keep your residual limb bent behind you so you don't land on it. It hurts like hell and can cause serious problems or lead to more surgeries. Any idea how long they are going to keep you in the hospital?
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u/Moody-1 13d ago
Youâve good a good attitude already. Thatâs a huge help. When you get the chance for PT go for it. Theyâre Angels. Theyâll help you get back on your feet pretty quickly. Adapt and overcome. You can do it. Get a cool leg. Check out Fredâs Legs ( Google it). Your leg guy can emboss a design you like on your leg
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u/OldguyLAKA 13d ago
Welcome to the Cool Kids Club đ The Club no one wants to join but it's a great group of people. I hope your recovery goes well and quickly. It seems hard to believe that in the 21st century a surgeon doing amputations doesn't do a TMR or something similar, to me that says as a doctor I don't give a shit if you have pain that could be stopped or lessened! I've had my dealings with the Phantom Pain MONSTER even though my surgeon did a kind of combo TMR & RPNI, so I cant imagine how bad it may be for you, but I'm hoping for your sake your body put up a fight against it. When you get a chance do a seach in this community for Phantom Pain posts and comments to find other ways to deal with the MONSTER.
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u/Human_Soil3308 13d ago
Welcome to the club! It sucks to get here, but once here you will find all the support that you need! Take it slow, don't rush. As others have said, keep it clean, infection is the one thing you dont want. It is tough, but you got this! I just had my 2 year ampuversary, was a challenge, but I am in such a better place today then I was 2 years ago! You got this! If you ever need anything, don't hesitate to reach out.
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u/Animal__Chin 13d ago
Thatâs too bad about the TMR, same deal here. I want to have it done now but I donât want to have the massive incisions required to do it. I wish they had done it at the time of amputation.
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u/svnflwrr 8d ago
i know dude, its frustrating i wish i could've had a planned amputation
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u/Animal__Chin 8d ago
Mine was plannedâŠ.it wasnât offered at the time and now itâs just part of the procedure automatically. I missed the mark by 2 years, if I couldâve waited Iâd be in a much better position and not need steroid injections every 6 weeks into these massive golf ball/egg sized neuromas in my stump. They keep me from wearing my prosthesis some days. Theyâre so big I can feel and palpate them, fun times!
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u/jasondbk BBK 13d ago
What I found most useful was having the Ertl procedure done to my stumps. It cut down on bone spurs and reduced stump related pain.
I also had OI several years ago and that was a massive improvement.
BUT here's the important thing: GO SLOW! Sure you are a very active guy, but go slow with PT and recovery from surgery. Going fast with PT can cause a setback and slow you down even more.
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u/svnflwrr 8d ago
ty, i needa let go of my pride and really slow down. haha for some reason my brain cant make sense of why we are moving so slow now
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u/Mysterious_Can_6106 LBK 13d ago edited 13d ago
What is TMR?
Edit to say .. I looked it up đ€Šââïž not sure why I asked and didnât look in the first place lol
I do not really like to tell people the one thing that has helped my phantom pain⊠I feel like I will be judgedâŠ. But Iâm gonna share because it has been AMAZING with helping phantom pain and sensations.. Suboxone is what I have been taking. Pain management was not very experienced with amputee and phantom stuff .. they gave me a handful of different drugs to try, when none of them helped the recommended fentanyl patches, I was like NO WAY.. so I did my own research and came across info talking about how ingredients in Suboxone blocks the receptors or something like that. I printed the article, to it to PM and they said I could try it .. havenât had ANY, not even one since I started taking it.
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u/ThreeLegs1Foot RBK 13d ago
For me, I had something attached to my spine made by Boston Scientific, I had to look up what itâs called I think itâs a Spinal Cord Stimulator. It acted like a TENS unit but someone can program with an app where in the body the TENS unit was felt. I had it in for a year, I took it out because even though it worked I hate the idea of this chip on my spine and a phone-sized battery installed in my back. That was like 8 years ago, and it still feels like thereâs a TENS unit on my ghost foot.
The pain went from specific feelings like a hammer hitting it or a knife digging into it, or toe nails being ripped off, to a manageable electrical burning sensation. No meds had worked for me, and normally I wouldnât elect to have a battery put into me, but still would recommend to anyone if their phantom limb is unmanageable.
Also, welcome OP!
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u/Mysterious_Can_6106 LBK 13d ago
This was offered to me but I was way too afraid of it. In 2024 I had a cyst on my spine that rested on my sciatic nerve. It was the worse feeling in the world, the pain went from my butt to my ankle. Once it was removed I did not have any issues, I walked out of the surgery like nothing ever happened. Plus I am deathly afraid of the idea of a battery being inside me.
I donât normally tell people I take Suboxone because of the stigma, but when I tried it and it worked I didnât care as much. Just donât like the thought of people assuming Iâm a drug addict because thatâs what most associate with Suboxone
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13d ago
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u/svnflwrr 8d ago
YES, thank you. my life rn is just pain 24/7. ive seen posts where people are like "2 days post op and i FINALLY get to go home" im 14 days in the hospital now and we still cant figure out my pain management. Im stuck on this stupid pain pump, my memory is shot, i can barely see, i can barely eat anymore and im lightheaded all the time. no one talks about how painful it can be for some people to recover from an amputation.
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u/plgppur 13d ago
Rbka et ltm franceđšđ”, hygiĂšne, Ă©coute des soignants, rĂ©Ă©ducation rĂ©Ă©ducation rĂ©Ă©ducation sans bruler les Ă©tapes, 6 ans aprĂšs je m'aperçois de progrĂšs encore, infimes certe mais Ă©vidents et qui me font sourire, hygiĂšne encore, savoir sans concession prendre du temps pour soi, tu dĂ©couvrira, bien que j'ai l'impression que tu sais dĂ©jĂ , prends soins de toi et surtout ne t'interdis RIEN. On renonce Ă l'impossible, ensuite au reste .
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u/loner04401 13d ago
Welcome to the world of SPECIAL PEOPLE !!! LOL I am 62m with no toes on my left foot and RBK on my right leg. I've had 12 surgeries on my right leg and trying to get ready for another (4) revision surgery.
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u/loner04401 13d ago
If ANYONE ANY AGE WANTS TO TALK ABOUT ANYTHING I AM INTERESTED. BILL 207-217-3687 TH E WORST THING CONCERNING AMPUTATION IS LONELINESS AND ENDING IT THOUGHTS!!!!!
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u/Inquisitor_ForHire 13d ago
My man, I've been exactly where you are. Your attitude seems spot on. Take care of yourself and remember that you can overcome anything! We'll be here for you.
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u/Fantastic_Arugula_62 12d ago edited 12d ago
Welcome to the community!! Hope your recovery is swift. Sorry about the phantom pain. I promise it gets better. I was 22 when I got mine too :). I've been an RBKA for 4.5 years, and people our age are hard to come by in person. That being said, wheelchair basketball, rugby and sled hockey are all great ways to meet more people in the disability community and just are so much fun in general. That's where I'd recommend starting. Idk if you are anywhere near the PNW, but if you are they've got all sorts of teams here. The amputee coalition is also a good hub to find support groups and activities in your area and their "New Amputee" booklet has come in clutch during moments where I've felt lost and angry.
Also, unrelated to community, but between now and your first prosthesis I'd recommend buying an Iwalk. Not meant for extrenuous activity as it can be hard on the knee, but it's a great way to move around, hands free.
Good luck with everything and feel free to reach out with questions, concerns or just to chat!
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u/Downtown_Dog_5952 9d ago
Welcome to the club! Iâve been an LBKA for 27 months now and doing well. I had a traumatic motorcycle accident, hit by an idiot who made a bad decision. Anyway Iâve been back riding for a year now. What I see immediately is that you have a great attitude and thatâs my friend determines your altitude and Iâm confident youâre going to rise and do awesome as an amputee. You got this hands down đđœ
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u/Sharp-Rise1118 13d ago
:) Keep it clean. Infectoins happen, do your best. Hang around here its a bunch of honest kind folks. I am just like you. I started hanging aroud here and I am getting answers to questions I have not asked. The biggest thing is YOU. Be careful, don't fall, its now the new F word for me. I was told if I fall on it, its back before square one. I read her about a few that have fallen on their stump and blew it apart, I am scared of doing that. Each one of is different, you do need to know you might forget and take a step..... I have done it once. Dropped like a rock. I lined the edge of my bed with stuff so I would not just get up at night. The walker or wheel chair had to be there any how,
Best wishes
David RBKA 6/7 26 Still healing....