IAmA 19 y/o amputee with a rare medical condition called Klippel Trenaunay-Weber Syndrome. AMA

My brother is an amputee. He lost his right leg below the knee in a work accident. The first Halloween after his surgery, he went as a pirate and insisted we all call him Captain Stumpy.

I love the pic of you on the bike. Is it difficult to balance on a bicycle with one leg?

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You learn where your center of gravity is, I fell off A LOT at first, but now I can ride with ease without falling over.

are there many hills where you live? I bike a lot and can't imagine trying to get up a tough hill relying on one leg to make that "up" motion of the pedal happen.

There are tonnes; hills galore in this country, it's why people love it so much. I just get a lot of speed up, then when the momentum decreases it becomes rather jerky as I peddle with the one leg until I reach a flatter area. Still works though.

How do you pedal?

I use a cleat. So I slot my foot into the pedal then pull it up where I would normally push down with the other foot.

Oh ok! The picture looked like there was nothing there. :)

That's because there is nothing there, my leg was amputated, remember? ;)

Lady here: Oh lord, not only are you ladyboner material you're also a cyclist. You're just trying to steal my heart! (PS: you make me want to ride more and man up- I live in NE, bike is packed for the winter.)

What do you mean by "ride"? ;) Winter riding is the best IMO, don't work up a sweat as quickly and you feel fresher in the cooler air. Then again, I live in a warm country that doesn't even snow in winter.

Every form of the word haha. ;)

US- Washington, D.C. It's currently 20-40 degrees with rain and snow. NO THANKS. Winter isn't fun. I want a perpetual good weather area!

I read 20-40 degrees and thought you were high or something saying it was snowing in those temperatures. Then I realised you go by Fahrenheit. ;o

Wow! I also have Klippel Trenaunay. My case is very minor but noticeable. My left side is smaller than my right all the way to my neck. I have the trademark birth spots all over my legs, side and arms.

When I was born the doctors tried to make my mother amputate my leg which was more or less a purple stub at the time. My mother refused and I have since grown into a perfectly normal looking adult.

When I was 3 years younger than you they (shriners hospital) offered me a free surgery on any body part of my choosing to even me out. I refused and told them to operate on someone that needed more help than me.

Hopefully, you turn the corner. Its very rare I get the chance to talk to someone with the same physical issues I have. The only thing I can recommend is stay in shape and keep your calcium up. This should help with bone issues later on. Also, donate blood every 2 months. It will help thin you out from the over production of blood that is actually causing your condition.

Great to find more people like me out there. :) I'm pleased you shared your story with me. Yeah, I've been trying to donate blood, still not allowed for another 6 months though as they wanted to wait quite a period for me to get everything back to normal after having the limb lopped. I like how you turned down the op because you were "minor" and someone else may have needed it more. I would have done the same had I not broken my femur so many times and almost died.

Keep on keeping on. ;)

Fuck femur fractures... I've never broken that bone, but I work as a Paramedic and I've seen people go through hell. I can give all the morphine on my rig and pull traction and it wouldn't t even touch the pain.

I wouldn't recommend breaking it. ;) Most painful thing I've ever experienced. Keep up the good work, gotta love paramedics.

Wow, indeed. I've never spoke to anyone who also has Klipple Trenaunay and here they are gatering on reddit! I hope everybody still believe it's a rare condition though.

What i have is nothing compared to you. With me it's only the veins in my left leg that are kinda fucked up, bone structure is ok (never broke anyting in my life)

As a baby looked like a innocent wine/port stain on the inside of my left knee, but as i got older, well see for yourself Imgur

Do you get pain if you're on the leg for too long? Or is it entirely superficial and just bulgy veins? I'm quite amazed at how many people with KTS are on reddit and posting right here.

Do you swim in circles?

Freestyle does not work for me, as I barrel-roll. Everything else is fine though.

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I used to swim when I couldn't even move my leg and everything worked fine. I think it's the fact that I got used to having that as ballast so now (after having it removed) I'm over-rolling or something. That's how my mate made it out to me anyway. I don't know the reason for it, it's just what happens.

Did you get to keep your amputated leg? I'd make a lamp out of it.

Also, do you have a prosthesis? Might be useful to hold snacks or something.

Yes, kept it wrapped up and in the freezer for a while but had no idea what to do with it. When I went in for the 4 inch trim after the two further breaks, I took it with me and had it cremated. It now sits in an urn on my desk. EDIT: Yes, I do have a prothesis. Very hard to learn how to use though as I did not have the muscle there already due to the condition. So I'm working on building it up before I can use it all the time.

holy crap! What is it like to be given your own body part after a surgery? Did they just hand it to you in a bag or something? Were there rules about what you could or couldn't do with it?

Very weird indeed. Nope, I was allowed to do whatever I liked with it. Apart from sell it, I suppose.

Can you describe your device (what's material it's made of, etc)? Could you also share roughly how much it cost you?

http://i.imgur.com/IbC3V.jpg Carbon Fibre, titanium, aluminium, pneumatic knee joint, rubber foot. Roughly worth $8,000 NZD.

Any reason they don't make the bottom half calf shaped? Seems like it'd be easy to do?

They offered, but it makes it heavier. And the main reason I said no is because I think it looks cooler this way. ;)

I had a feeling you were a kiwi, the Warwick 1B4 book was a dead giveaway. Where was the prosthetic made, locally or elsewhere?

The knee was imported but they made the rest of it at the chch limb centre.

That's cool as shit, I'm imagining they had to take moulds of your leg, was that done in Christchurch or locally?

Yeah, had to have a full casting done. Was a very long uncomfortable process. Done in Christchurch with the awesome guys at the centre there.

I'm sure you've already considered this, but a physical therapist could help you tremendously with the use of the prosthesis! :)

I've seen a fair few. ;o

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I'm quite content with having it in an urn. Having it around my neck would be a little... weird?

Did it hurt more before of after? I know a girl with this, and she can do anything! We went roller skating! Best of luck!

Best decision of my life, nothing there to get in the way anymore. I'm pain-free for the first time in years since it was lopped off. Thanks bro.

Does it help or hurt with the ladies?

Pity vote, bro. ;) "I have one leg, I need a hug"

Hmm, would it be worth it to cut off my leg?

Short answer: No. I wouldn't risk the pain of losing a limb upon even my worst enemy.

Do you ever get an itch in the leg that isn't there? If so how do you deal with it?

Yes, these are known as phantom pains. The worst is when I get an itchy foot and I go to scratch it but can't. It drives me crazy. My best mate is really good at making things out to begin this scratch such as describing a feather on my toes. Once it starts I have to find a mirror otherwise I'll be writhing round with an un-itchable itch.

Weird how looking at myself in a mirror, at the stump, ceases this itch instantly.

I'm an avid cyclist and don't get passed up too often, especially by women. (I don't mean to be sexist, but it's true.) Then one day I was passed by a woman with a prosthetic leg. I'd be damned! TL;DR: You're a badass for biking still!

Just because there's a piece missing doesn't mean we're not still competitive. ;o

But yeah, I love the generic attitude that goes with people who lose limbs. There are two extremes, this is true. But more often than not it's "well, it happened. I'm stuck with this. Might as well do what I can and make the most of it."

I hope it motivated you to train harder. :)

So for the lazy , What is the condition you have ? what does it do ? Before you were diagnosed what did you think was wrong ?

Vascular malformation. I have a shit-tonne of veins that aren't needed all over my body (more-so were focused in my leg which stopped the bone strengthening). Every affected area is hyper-sensitive. I was diagnosed when I was 2 weeks old, so I guess I was thinking "I love this teddy-bear" or "where's my bottle". I dunno, can't remember.

How did you break your leg? Was it just during day to day activities?

Haha, well. The first time was rather silly. I was 7 years old and slipped on the kitchen floor. Bone was so weak from the condition that it just fractured the tibia and fibula. Then after that, it was very much my fault. 2nd: Playing volley ball hoping around went to spike the ball and someone came down on top of me snapping my femur over my shoulder. (that one hurt a little) 3rd: Playing soccer on crutches, tried to do a bicycle kick and ended up slipping, landed with one crutch under the bone and the force snapped the tibia and fibula. My ankle could touch my knee. ;) 4th: This was after my first amputation. Was playing soccer with hockey sticks. I think you could probably guess what happened. Took a full swing to it fracturing the femur. 5th: Was at rowing training play-fighting with another rower. Went to pretend to kick him with my stump (as a joke) he flinched and blocked the stump with a lot of force and it just broke in two.

I'd call them day-to-day activities, yes. Even though my doctor told me to stop playing sports. But better to enjoy life than be a bubble-boy, right?

Could the reinforce the bones with titanium rods or plates to prevent rebreaking?

Major surgery like that in a hyper-sensitive area with more veins than any normal person was not any surgeon's idea of a clean op.

If they were to do that they probably would have ended up damaging me a lot more than a clean cut straight through. Also, my knee was pretty fucked up.

I know this guy! His name's Andy, and he lives in Australia. He's in college now and doing awesome.

Nice guy, too. Have a great time with life bro.

*New Zealand. Damned Americans and their assumption that we're the same country. :< Also, hi Payne.

When you buy new shoes, what do you do with the right shoe? (Considering you don't use it on a prosthetic.)

Donate it to the Limb Centre for someone who is missing their left leg that is the same size as me.

Do you ever go to the Limb Centre to get left shoes?

I've tried, but there are never any in my size there. I have a ridiculously large big toe.

Were you afraid? Knowing that your leg would soon be gone? Or was your leg not that useful anyway?

I'd be crazy not to be afraid. It was the scariest thought ever. I mean, I felt rather attached to my leg. Even if it was useless.

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Perhaps one day. It'd take a LOT of training and I'm still at university. So I think I'd want to finish with my studies before taking on such a large project.

You must hold a world record for standing on one foot.

I can't manage it for more than one minute.

Haha, you adjust to it. I had to do the beep test, agility test and sprints at school all by hopping.

Dude, that is some astonishing shit. Good onya.

Props for the cycling. Which part of the country do you live in? Do you do many / any competitive events? (I'm in NZ too - Taupo.)

South Island, brah.

How has it been adapting to life?

Hell at first, but looking back now, I've come an incredibly long way. Certainly went through some low points, though.

Thank you for continuing to do what you do. You are proof that people (like me) that have excuses for everything, should be exercising, and be more thankful for everything we have. Thanks man, and take care :)

Drop and gimme 10 pressups.

How long is your current stump? How much weigh can it carry? What happens if you try to bend your nonexistent knee?

From the crotch to the tip it's ~20cm. It can carry my whole body weight, haven't tried anything more yet. If I try to bend my knee my stump has a spasm as all the muscles fight each other as the nerves don't actually lead anywhere and get confused.

You look like me. Haha. AK on my left leg. Good for you man!!

Bro, we should swap shoes!

What is the hardest and easiest things to do in daily life? What has changed?

Hardest would be carrying items that normally you would with your hands such as a glass of water. I have to hop with it which can result in spilling it everywhere. Gets rather frustrating sometimes. Easiest would be keeping fit as I walk round on crutches all day every day. (free gym)

What's changed? I feel like I've come out of my shell after having the limb lopped off. I'm a lot more out-going and whatnot now.

Do you not use the prosthetic then? Why not?

I'm still building up the muscle in my stump so I can use it all the time. Still not strong enough to walk un-aided on it yet.

Is there a risk of something similar happening in your other limbs? If so, does that knowledge change the way you live your life?

The whole condition runs through the whole of my right hand side and most organs. It was just very concentrated in the right leg. There is (or so I've been told) no risk of it spreading or worsening so I am quite relaxed. Then again, even if the way I lived my life did affect the condition I'd still do what I do.

Here's me... Oh, yet another redditor with one leg or seven spleens something, yeah, whatev... ON A BIKE, WOAH!

So... Bike questions!

How long have you been cycling?

How do you mount/dismount? How do you handle having to stop (really stop, like at a long light or something?) Can you trackstand?

Do you use a round chainring, or something elliptical to help get through the bottom of the pedal stroke? It looks like you have only one pedal attached--have you tried riding with two, or just a weight or something on the drive-side crankarm to help keep things spinning better? I've worked on/ridden bikes with one crankarm or pedal for test riding purposes and it's a very floppy, sloppy spin compared to having a balanced set.

Other than one pedal, anything special about your bike?

And a personal/regional preference question: front brake on the left or right lever?

Last one, a stupid theoretical-type nonsense stereotypical reddit question: for cycling purposes, would you rather have one arm, or one leg? (I know a couple of one-armed cyclists IRL, I need to ask them this question and hope they don't punch me with their good arm. Here, the power of narwhals protects me.)

I'd say about two years now.

To mount I get the bike rolling then just hop on, clip myself in and I'm off. To dismount I just unclip then brake until I can put my foot down.

I just use the momentum of my pushes to get it through, otherwise I just pull the peddle back up and through with my cleat. I have tried two, didn't really make a whole lot of difference. I would lose the crankarm on the right hand side but if I did the chain would come off. Once I get speed up the whole process is very smooth.

Nothing special apart from one pedal, no.

Right lever for the front brake, iirc. Would go out and check right now but cbf, I just woke up and am in bed. ;o

Two legs would give your body a lot more endurance IMO, as you can split the effort. Then again, that's from a leg amputee's point of view. Quite honestly I can't say I'd rather have one limb over another as I'd rather have all of them.

How did you deal with chronic pain? Medication, meditation...?

Medication at first, then I kinda learned how to block out the pain during the day. If ever I were to give my leg/stump a good whack during the day, I wouldn't be in pain until I was lying in bed.

Now I only take medication if I've had a very long, physically demanding day.

As a (hopeful) future doctor, was there something done by the physician that made you feel "safe" (in terms of getting part of your leg cut off) or comfortable with your decision to get an amputation?

Nothing really. Just that it was probably the best way to deal with how things were going.

What kind of prosthetic knee do you have, and have you tried using it while riding?

A pneumatic knee. Can't remember the model name or anything of it. Can't use it for riding as my stumps too short for me to get enough leverage through it for it to work on a bike.

Thanks for the reply, I'm actually going to school to be a prosthetist and I've never heard let alone studied your rare pathology. But I have built a prosthetic leg for an above the knee amputee and I do know how hard it is to fit a patient with a short residual limb.

Oh good choice. My advice to you is to be super friendly. :) My Prosthetist is one of the nicest most friendly guys I've ever met and I don't despise my limb centre visits because of the people there.

what was it like to first wake up from surgery and not have your leg there?

Didn't think it was gone at first because it still felt like it was still there. Wasn't until I fulled the blankets off and almost passed out from the shock of it that it sunk in. So I'd say rather shocking.

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I have worn the compression garments made by Jobst (Jobskin) in Australia all my life. Without them life was just too painful. Even now I still wear them as my hip is still affected by the condition (and back and organs but nowhere near as bad). I would HIGHLY recommend wearing these garments. No matter how horrible they can look, it's the best thing for this condition that I know of.

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Yeah, I know what you mean. It's a pretty nasty condition. But it makes us more unique. ;)

Do you scare kids with your prosthetic leg? My grandpa does it all the time at dinners where family and friends are invited.

He is missing one eye, really bad hearing, has dentures and is missing one leg. He keeps saying he was bought at Ikea but some parts went missing, and his warranty has run out.

Also, can you do wheelies on your bike? I can do it with one leg, but then again, I use the other one to keep balance.

Not with the leg. But I am forever being pointed at and hearing "look mummy, that boy has one leg" it's quite entertaining watching the parents reaction. 9 times out of 10 they go bright red and shush their child while directing them away from me. Other times they'll approach me and we'll have a conversation about it (I prefer this, but it rarely happens because people are so worried about offending people who are "different"). I do like to tell kids that I didn't eat my vegetables when I was younger though. ;)

I cannot do wheelies on my bike, I can in a wheelchair though.

We're you worried that people would make fun of you in school? Kinda stupid I know but they're some cruel people in this world. Also how was it trying to find the one? Did you find that person!:)

Wasn't worried at all. Always been that kid that kinda gets along with everyone from nerds to jocks. Had one of the biggest "get well soon" cards ever. Bro, I'm still 19. Living life, having fun, making friends, enjoying myself. Not ready to settle down just yet. ;)

Why was the primary decision made to amputate your leg? Was it because the pain was unbearable or because your leg was non-viable?.

I was used to the pain, had kinda gone along with the idea of living with it. That was until I got a nasty in-grown toe-nail. Because of all the veins and hyper sensitivity the surgeons didn't really want to attempt to right that. I'd been suggested amputation before-hand but had shrugged off the idea as it seemed a little over the top. However, I was a little more mature this time around being 15 and all. Anyways, I was left to mull over the idea. Decided to contact a double amputee called "Mark Inglis" the New Zealander who climbed Mt. Everest with two artificial limbs. He was very very humble and has some amazing views on life. I'd have to say he was the one that helped me convince myself that I needed the amputation. The words "anything's possible, mate" inspired me beyond anything.

So, yeah.

Otto bock knee and sach foot? Looks like your socket is flexed, did you develop a hip flexion contractor or due to kts...keep up the good work bud love hearing success stories like this.

Not sure on the first one. I developed the hip flexion due to the KTS, yes.