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I am a 15 year old boy with 1 and a half legs, AMA!
My name is Garet, and I am a 15 year old amputee. I was first diagnosed when I was 7 years old. My mother had noticed a lump on my left thigh while I was lying on the floor (all other seats were taken in the living room) and watching television. We went to the hospital in the capital of my state (in your face, everyone who wants to know where I live), and I had an MRI done. The results came back and I had a tumor in my thigh, and it was roughly the size of an ostrich egg. I had a biopsy done on it, and it was discovered to be fibromatosis, a rare form of soft-tissue tumors that are non-cancerous. After my biopsy and diagnosis, I was scheduled for a surgery to remove the tumor, which had grown to the size of a small loaf of bread. I had the operation to remove on the day of my birthday (it’s in January, for time-reference). After that, it seemed like I would be just fine; but, of course, you see how long this is, so you know that there just has to be more. This happened while I was in second grade, just so you know.
A few months later, my mother noticed another growth in my thigh, and I went back to have it checked, and, lo-and-behold, it’s another tumor. Once again, my doctor performs a biopsy, and it is again fibromatosis. Shortly thereafter, my doctor removes the tumor, and I seemed to be recovering well. All this happened in 3rd grade or around that time, for reference.
I entered 4th grade, and I was having regular check-ups, and more tumors were sighted under the radar known as Magnetic Resonance Imaging. My doctor suggested that I try going through chemotherapy, as surgeries have shown to be only temporary fixes, and we need something to get rid of it once and for all. I started my chemo, and I went through it for a year; oddly enough, my hair didn’t fall out, and I was one of the “lucky” few to go through chemo and keep their hair. I had to go to chemotherapy every Friday for the first half of the year, and then every other Friday for the second half, totaling 39 treatments; I also had to leave school early and had two surgeries: one to insert the port to my heart, and one to take it out.
After another MRI, the chemo was shown to be ineffective, and we needed to get rid of the tumors in my leg, so I had another surgery in 5th grade (this time by a different doctor; my old one stated that he wouldn’t touch my leg again unless he was amputating it). Not too long after that operation, I had a staph infection in the surgical site, and had to have another surgery to get rid of it.
Well-you probably guessed it by this point-the tumors came back. I was in the 6th grade, and I needed something new to attempt to fix my leg, as the tumors seemed to have been working their way lower down my leg. My doctor suggested radiation to my leg, and I tried it. I went to radiation treatments for several months, having to leave school early every time I went.
The radiation didn’t really help with shrinking or stunting the tumors’ growth, although it did stunt the growth of my leg in general. The tumors were shown in another MRI to have moved lower, around my knee area, and it wasn’t covered in the radiation area as it wasn’t seen in the MRIs taken before treatments started due to the fact that a full leg MRI wasn’t done. Because of these new gold deposits in my mine of a leg, surely the prospector called Doc would want to dig out those bad boys with his pick and hammer, so in he went.
After more inevitable tests, more tumors showed up, and I had to have proton radiation done to hopefully stop the enemy at the gates. I had these treatments for a year during 7th grade, and it caused my knee to not straighten fully because my hamstrings were now constricted. Another side effect was the skin on the affected seeming to fall off, leaving an open spot and seepage coming out for some fresh air. This radiation, however, did seem to work, as the tumors had actually started shrinking.
Because of the aforementioned hamstring problem, I was walking on the front part of my foot, which is not an area accustomed to such use and pressure. This caused a stress fracture to develop in the front part of my foot, and I was on crutches for 3 months before my doctor gave me a choice: keep the leg and stay on crutches pretty much forever or lose the leg and be able to walk normally eventually. This choice was given to me in March of last year, which was my 8th grade year. I made the decision to have the amputation done, although I’m sure many would do the same, as it seems better in the long “run.”
The amputation was performed by my surgeon on March 26th, and it seemed to have gone perfectly. The type of amputation was a knee-disarticulation, which is when your leg is disconnected at the knee, which means that you have your entire femur and kneecap, but have no tibia or fibula.
But, of course, I got an infection about one month later, and had to have it debrided. To make sure the infection couldn’t come back or stay in the wound, I had a wound-vac on the residual limb. A wound-vac is a vacuum that sucks out all of the bad mojo, and does so by a tube connecting to your afflicted area that is surrounded by a tight plastic seal to prevent air in the vacuum. I had this wound-vac for 6 months, throughout my entire summer break, and even into 9th grade. I also had to leave school in 8th grade after the amputation due to phantom pains, which seemed to always come to me whenever I wasn’t distracted by something funny or interesting, so you know school was not a good environment for that. I found refuge from the pains that plagued me in computer games such as League of Legends (I’ll be expecting my letter in the mail, Rito) and YouTube videos.
After the wound was completely clean, and no sign of any more problems in the future, I could begin the process of obtaining a prosthesis that I could then use to walk and even run. I received my prosthesis after the process of a month or so of fittings and makings for the prosthesis because it has to be a perfect fit due to the fact that you’re literally wearing it everywhere unless you’re in water or sleeping. I got my new leg on September 30th of last year, and it felt fantastic. Since then, I’ve gotten a new socket for it, as my stump shrunk. Also, I can walk almost flawlessly and can run because I had a great physical therapist and attended Amputee Walking Schools, which are basically classes on walking as an amputee taught by Todd Schaffhauser and Dennis Oehler, who are two former Paralympic athletes and set world records for leg amputee running. NOTE: Whenever I was getting MRIs or having operations done, I had to travel for 1 ½ hours to reach the capital, and had to drive for 2 ½ hours for my proton radiation treatments.
TL;DR: Was diagnosed with mom’s spaghetti, had to remove all of my spaghetti and meatballs. Read it ^
PICS: Picture taken just after the cast was removed from the amputation http://imgur.com/0vCYhyz
Picture taken of the infection at its worst, also you can see the scar from port surgeries http://imgur.com/97kYpsx
Picture taken of me and my prosthesis (it is backwards due to the use of a mirror) http://imgur.com/tEhML6Z
Picture taken of me trying on my prosthesis to make sure it fit well before I got the finished product http://imgur.com/w6MS42E
EDIT: Thanks to /u/karmanaut for the suggestion to post a picture with my username as proof, and here it is http://imgur.com/ssNcqP9
OneLeggedDanger10 karma
Working on that right now, and thank you for the suggestion EDIT: The link to the picture is posted in the post at the bottom now
glitzyjan10 karma
How did you deal with the emotional aspect of accepting that you would go into surgery one way and come out forever changed?
OneLeggedDanger20 karma
I actually didn't feel too worried about that. I was never really scared about having the surgeries, just normally nervous and anxious. It was a bit odd knowing that I would be losing a part of myself, but it made me feel better that I was going to have another leg and a chance to reinvent myself. I had spent years with scars and surgeries, and I was ready for it to be over.
glitzyjan7 karma
So it was more of a relief than an anxiety for you. That's great. I'm glad it's over for you and you look incredibly healthy and confident. Congrats on making it through such a horrible ordeal.
OneLeggedDanger5 karma
Thank you very much, and I am very glad that it's over with. I've started going out more often and hanging out with people, as well as working out to get into shape, and my confidence has gone up because of it.
theroundcube8 karma
Because you're 15, will you occasionally need new prosthetic leg because you're still growing? And how is sports and other physical activity? In your opinion do you manage well?
Also just want to say that the third one that's mirrored actually looks pretty damn cool.
OneLeggedDanger8 karma
I will need new sockets for the my thigh because I'm growing, and I've gotten it replaced once already. In the physical activity department, I will be playing tennis for my school in the fall and I liketo do things that are physically demanding. I play ultimate frisbee with friends and it's actually very fun, although tiring. In my opinion, I would say I manage well because I was on crutches for most of last year and I went back to school on them, and I would carry my own books. And thank you for the compliment on the picture
theroundcube4 karma
Cool thanks for answering!
ooh i just got another by reading your answer. If only one leg is present to physically get tired, could you just put all (or most) activity on the prosthetic till the other is ready to go again?
OneLeggedDanger6 karma
I actually have a friend who thinks similarly to that. I couldn't do that because my prosthetic is manual, meaning that it will work, but I have to put in the effort. I have to extend and contract my thigh constantly whenever I'm doing something, and that is what tires out my left thigh. Also, the end of my stump gets sore and sensitive whenever I do a lot. My friend makes jokes about how I can run infinitely because I could just keep hopping on my fake leg and keep going like that forever, but it's not possible, as it would take more energy than using my good leg and is more difficult. NOTE: My friend also calls me Robo-Leg
OneLeggedDanger13 karma
That is true. When I first woke up from the anesthetics, I thought that my leg was still there because it felt like it was. I looked down to see it, but there was an absence under the blanket where my leg should have been. Now, it feels like it's there, but only faintly. I get phantom pains, and those are typically in my foot, and I can tell where my leg should be. I always have the sense that it's like a ghost and I can just feel it.
East_Threadly5 karma
That's crazy. Does it bother you? (the phantom pain, not the missing leg)
OneLeggedDanger11 karma
The phantom pains only bother me when they start hurting a lot, which is typically a stabbing feeling in the bottom of my foot. Other than that, it's not really too bad for me, I just get used to it and ignore it.
East_Threadly5 karma
That's really interesting, thank you. I wonder why it does that? Or how it can even hurt.
OneLeggedDanger9 karma
What I've heard from my doctor is that the nerve endings that are disconnected during the amputation keep firing off signals, and they are just automatically interpreted into pain, as if you're leg was still there. Whatever the reason is, it's really odd lol
East_Threadly8 karma
You're a badass. I get all grumpy when my knee is sore, this kinda puts things in perspective.
OneLeggedDanger30 karma
Don't feel bad about your problems, everyone has to deal with them. Don't be ashamed of your own, because we all have them.
OneLeggedDanger21 karma
I was waiting for someone to ask that, and you did. The prosthesis attaches using suction. When I'm putting it on, I put on a black sock with a rubber seal on the outside of my stump, and I put hand sanitizer or some other liquid with a high alcohol content. I use a liquid so that my stump can slide easily into my socket, and it needs to have a high alcohol content so it evaporates quickly, preventing my stump from sliding right back out. To take off the prosthesis, I press a little white button on the socket to let air back in, and I just slide it off.
apadden7 karma
Reading this response was interesting. I always wondered if amputees found it offensive to call their amputated limb a "stump". I guess not.
OneLeggedDanger30 karma
I'm sure some do, but I don't take offense to really anything said about my situation. You see, I'm over 6 feet tall even though I'm short one foot
BrennanBr1 karma
Weird question maybe, but how does the sock stay on? Why doesn't it eventually slide down like the way people constantly have to pull up their dress socks again?
OneLeggedDanger1 karma
I'd have to say it's because the socket is on so tightly that it doesn't get loose, and it's held on there by the socket constricting it
OneLeggedDanger5 karma
Not at all. It may have brought trouble to me to have the amputation, but I would be worse off if I kept the leg
nr1956 karma
Does your prosthetic contain any electronic aspects or is it purely mechanical?
OneLeggedDanger6 karma
The prosthetic has a hydraulic tube which makes the resistance that it needs. The way it bends is manual, however. I have to make it bend by putting pressure forward on the foot, so that the knee will start to bend, and then I swing the leg through and kick it forward so my knee locks for my next step so it doesn't buckle.
EpicTacoTruck3 karma
Is that tiring/difficult even after you have had the prosthetic for a while?
OneLeggedDanger5 karma
Not really. The only problem is that I get sore after lots of walking
keysplease886 karma
So tell me. Any interst in tricking out your new leg? My SO has always said that if he ever needs to have a leg amputated he was going to get robot legs. I know prosthetics are seriously pricy but do you think you might ever customize your leg? (Personally, Making my leg look like something out of tron legacy would be something I would do :P)
Your post was a fun read, I'm glad you get to put all that time spent in hospital behind you! Good luck!
OneLeggedDanger8 karma
I haven't really put any effort or thought into customizing it. I've never been really a person who will put all of his interests out into public. I feel like when I do that, people judge me before they know me. I have thought about possible dressing up as a pirate for Halloween, and I've thought about putting some stickers on my leg as well
keysplease883 karma
Cool, pirate is always a good option. I don't know if you have seen it (I'm sure another Redditor can link it) But there is a guy who has also had one of his legs amputated and does absolutely awesome halloween costumes. If I get a chance I'll post it, they really are great!
OneLeggedDanger4 karma
Oh yeah, that's Josh Sundquist. He's a role model to me, because he does absolutely amazing things and doesn't use a prosthesis. He also has his own YouTube channel
kendraexplosion5 karma
Since having your leg amputated, do you have any apprehension about future endeavours? For example: dating, travelling, working?
OneLeggedDanger5 karma
I'm pretty set on going into the field of prosthetics and orthotics because of my experience with it now. Also, I'm a bit nervous about dating people; I had a girlfriend a month ago, and she was fine with it. We broke up for other reasons though. Also, travelling isn't too bad. I've asked about it, and airports seem to be pretty nice about amputees, and you may just have to show them your prosthesis.
shtrouble2 karma
You may also be interested in checking out biomedical engineering for prosthetic r&d
OneLeggedDanger6 karma
Not really. There are a few, just when people are nicer to you and people will talk to you because of it, but no real advantages as far as I have seen.
OneLeggedDanger1 karma
Don't be sorry, I should be saying thanks because you pointed out another advantage lol
thecolourofthisstone3 karma
Hi! I have a few questions for you!
Do you ever wish you'd had the leg amputated when your first doc suggested it?
How much choice did you get in what the prosthesis would look like? (If any! We're there different colours?!)
How long did it take you to learn to walk with the prosthesis?
Do you have more than one prosthesis? One for athletics and one for day to day for instance? You said you played/were going to play tennis, will you wear the same prosthesis for this as you do just to walk around?
Thanks for doing this AMA, you seem like a great guy with a really refreshing and positive outlook!
OneLeggedDanger5 karma
1: I don't wish I had the leg amputated when my doctor had first mentioned it because I would've handled it much more badly than I did last year due to the age difference. Also, my right leg became extremely strong from being on crutches so often and so long, so I was better able to transition to it being my only leg.
2: The socket part of the prosthesis is what I had the choice in. It's black because that is the default color of the socket, but I had the choice to get different colors. The way I had the choice was that the socket is made by putting a cloth or some material into a hard carbon-fiber socket, which is clear, allowing the material to show through. I stuck with the default because I thought I would get tired of looking at a pattern or other color every day.
3: It took me a few weeks to really learn how to walk, but it was mediocre walking. The main difficulty with it was the sensitivity of my stump, but I got better at walking after that eventually went away. As I said, I went to Walking Schools, and they really helped in the development of my walking skills.
4: I have one prosthesis at the moment, and I do everything in it except for swimming or sleeping because I can't wear a prosthesis at all during those times. I will be getting a new prosthesis called the X3, which is a leg that is used for military personnel, and is pretty much the best leg out there at this time. I'm getting fitted for it this Friday, actually, and I'll be using it for school and daily activities, and maybe even sports or athletics.
thecolourofthisstone3 karma
Wow that new one sounds amazing!will you get to keep your current one? I'm assuming you're in the US? Does your insurance cover all this for you?
Good shout out not getting a mad pattern, you're totally right, I suppose it would be a bit like getting a tattoo on a whim! Best stick to something classic.
OneLeggedDanger6 karma
I will keep my current one for anything that is really tough on my leg, and I am in the US. I happen to have a special state insurance that covers anything related to the tumor problem in my leg by 100%, which means I can get the most expensive leg I want.
thecolourofthisstone4 karma
That's brilliant! I'm really glad for you, it sucks to see stories like yours where families are snowed under by debt in the end.
Best of luck to you in the future!
OneLeggedDanger5 karma
Thank you, and it really is horrible when families can't afford it or they don't have good insurance.
feldamis3 karma
Just a weird question. Did you get to hold your amputated leg afterwards? That would be awesome. Think of all the jokes!
OneLeggedDanger3 karma
I didn't get to hold it or see it whatsoever after the surgery. The leg was pretty much hacked up afterwords, but I did make jokes about my dad putting it into a high heel, putting a fishnet on it, and making it into a lamp (very similar to the lamp from A Christmas Story)
Cupcakes_n_Hacksaws2 karma
That is a sexy looking bionic leg. Get much action by abusing it?
OneLeggedDanger6 karma
I have made jokes similar to that before, such as my stump being the shortest appendage below the waste
3AlarmLampscooter2 karma
If the opportunity for a leg transplant without needing immunosuppressant therapy ever presents itself, would you take it?
OneLeggedDanger2 karma
I probably wouldn't take it because that would involve a lot more trouble for myself, and it would feel like I wasn't me anymore after I've learned to have a fake limb.
OneLeggedDanger1 karma
I believe I'll be releasing it in September. The past few months have been crazy for me and the Four Crippled Seasons, but we've pulled through and we'll have some great new songs for everyone! And a little teaser: we may or may not have collaborated with Lil' Wayne, the most crippled human being ever
OneLeggedDanger3 karma
It was sent to a pathologist so they could check the leg, and they actually found more tumors even lower in my leg. Then, they just get rid of it somehow. Some conservative people want their limbs cremated
Blue_Gray2 karma
How close is a prosthetic leg to a normal leg? Do you walk with a limp? How much mobility do you have in your prosthetic ankle?
OneLeggedDanger2 karma
The leg is fairly close to a normal leg but the knee is a bit further down because of the hinge not being able to be attached straight to my knee, and needing to be attached to some part of the prosthesis; I walk with a slight limp, but that is because my prosthetic leg needs readjusted because I've been growing very quickly. The ankle has no mobility because I wouldn't be able to control it at all, and I would be very unstable.
OneLeggedDanger1 karma
The prosthetic leg I have was picked by my prosthetist, and I go by his word because he knows the field much better than myself.
LemonLimeSoFINE2 karma
Im a wound care nurse and know all about the wound vacs! They work wonders! You went through alot at a young age. Do you feel you had to grow up too quickly or missed out on things as a kid?
OneLeggedDanger3 karma
I do feel like I missed out on a bit as a child and growing up, but it gives me more motivation to try to experience more in the future, and it gives me a better outlook on life.
CommanderCuntPunt2 karma
I watched a TED talk a few months ago about dealing with phantom limb pain. The short version of it was that if you're having a phantom limb pain and you watch someone massage the part on their own limb the pain may go away for you due to some weird missing limb brain disconnect. Have you ever tried this or heard about this at all in physical therapy?
OneLeggedDanger1 karma
I haven't heard about that type of treatment before, but I did try some treatments and they didn't work. I was even taking Neurontin, a medication that is supposed to decrease phantom pain, but it didn't help at all, and I just stopped taking it whatsoever. My phantom pains started getting less severe and started occurring less over time.
deviantelf2 karma
You've mentioned you wear your prosthesis always except swimming and sleeping (which seems for obvious reasons), so I wonder have you been swimming?
Is it harder to swim with just one leg, I imagine so. But then I think people are great at doing things different ways when they don't have a choice, so I wonder.
And thanks for the AMA!
OneLeggedDanger2 karma
Swimming is much harder than it was with two whole legs. I've been swimming every day the past several days so that I can get more muscle tone, and it is really tiring, and I'm much slower than a normal swimmer. In competitive swimming, though, amputees can attach a fin to the stump, and they go much faster than the normal swimmers
deviantelf1 karma
The fin sounds awesome (if one can get it, as I'm sure money is involved)... but not the reason for needing it. :(. Also sorry swimming is rough, I can only imagine. And of course thanks for answering!
OneLeggedDanger2 karma
No need to be sorry about it, everyone just has to play with the hand that they're dealt, and I'm making the best of mine.
OneLeggedDanger1 karma
The operation was about 45 minutes long though, so there were much faster and clear results than Weight Watchers or Jenny Craig, so they can go suck it
maddymartin1 karma
your story fascinated me, im so blown away and impressed by how mature and humble you sound for being only 15. what was the hardest part of all of this? ps: rock on
OneLeggedDanger2 karma
The hardest part was probably getting used to or getting over the phantom pains. They were practically constant, and they were at their worst while I was not entertained. This made going to sleep almost impossible, so I had to use my iPod to distract myself by playing music. One song that I listened to almost constantly to do this was Stairway to Heaven performed by Apocalyptica.
OneLeggedDanger3 karma
I've read the book and seen the movie, and I can't tell you how many people have compared me to Augustus Waters
EDIT: I do not take offense to the joke
karmanaut10 karma
Could you also take a picture of you and your leg now with a sign that says "Reddit /u/OneLeggedDanger" so that we can be sure that these are really your pictures? Thanks.
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