I'm the brother who chose to get a below-the-knee amputation. Ask Me Anything!

Good to see you in such positive spirits, OP!

Just curious, did your insurance company foot the bill?

Yes, they did. I am super lucky

Did the surgeon have a hilarious reaction when he/she saw the awesome tattoo?

Apparently he got the picture of my tattoo in an email while he was at a conference in London. He showed it around and it somehow became the hit thing at the conference

You're clearly creative, have you been thinking about possible Halloween costumes? If so, what's top of the list?

Me as a surfer, my girlfriend as a shark. Complete with the surfboard and the bite cut out of it

You seem to stay very positive and keep a fantastic sense of humor through this ordeal and I applaud you for that. This may be a little too personal, but how scared were you going into the procedure? Was imagining life without half of your leg a scary thought for you? I know that it would be for me.

Right before the surgery, I was definitely freaking out a bit. It was such a "no turning back" decision. But as soon as I woke up from the surgery and looked down, I knew I had done the right thing

Damn, it looks like you're taking it really well. Are you interested in one of the vanity prosthetic limbs that would totally make you look badass? Some photos here - http://mrare.ca/blog/beautifully-designed-prosthetic-limbs

I am definitely looking into UNYQ limb fairings. Those things look awesome

You seem like a really fun guy, you gonna mess with people and pretend like your foot fell off in crazy situations sort of like "Arrested Development"?

Furrrr. Suurreee. It is one of the biggest things I look forward to

I had a professor with a prosthetic leg. He said his favorite bar trick was to bet someone $20 he could balance an open beer on the bottom of his foot. When someone took the bet, he took his leg off, turned it upside down and put the beer on it.

yes. Yes. YES. YYEESSS!!!

Did they actually amputate along the dotted-line tattoo?

Nope, I got the one low enough that they would chop it off completely

What did they do with the foot?

They took it away, I was not allowed to keep it. I did ask the doc to dissect it and take pics of the inside. So I got to see how messed up it was

Op plz deliver we would love to see the pics

This is looking at the front of my ankle, with my leg pulled back. On the right side you can see the rough bone with no cartilage. NSFL

Can you explain what I'm looking at? I clicked the link and not entirely sure what is what.

You are looking at the top of my ankle bone and the bottom of my tibia. Imagine sitting on my toes looking back at my ankle. Then the ankle is cut open, and the leg is pulled back

How you feeling post op?

I am feeling pretty good. Phantom pain is definitely a thing, and it is not the most fun thing.

Grab the mirror!

I am using the mirror! It doesn't make it go away completely right away, but it definitly has been getting better every day

Dumb question- for those of us not familiar with phantom limb treatment, what does the mirror do?

You place the mirror between your legs, so it looks like the reflection of your good foot looks like the amputated foot. I then work on moving my phantom toes at the same time I move my toes on the good foot.

I hope that actually makes sense.

Can u explain what phantom pain is? Is it your nerves like freaking out?

It feels like my foot is still there. It also changes as I heal. It used to feel like my toes were crazy clenched and cramping, it has now transformed to feel like I am getting pokes from big needles in my foot.

Are you noticing any "phantom limb" sensations?

yes, right now it feels like big needles going into my foot

Does it feel like you can still wiggle your toes?

Yes! It is so weird. I can feel myself moving my big toe when I concentrate on it

You seem like an awesome guy! Have you ever thought of getting a prosthetic that had a bottle opener like those at the bottom of sandals?

That is a great idea! Never thought of that.
I actually would like to get a leg with a USB port that converts the kinetic energy from me walking into electrical energy to charge my phone.

Hey, sorry to hear about the amputation, but it looks like you're gonna be just fine with your great attitude!

What are you looking forward to the most in these upcoming months? 6 pairs of socks now lasting for 12 days?

Looking forward to running again. I feel like I will break into a sprint at random a lot

What time are you going to bed?

Good question. This is so much fun, I have been sitting on my butt watching tv the past week or so. The interaction is great. And it is nice to see all the support!

I didn't see your username until just now. Touche.

Hahaha good night motha fuucckkaaa^aaaaa

both of you should go to bed! even cody and shasta are sleeping by now!

Ladies and Gentlemen, my girlfriend has finally made her lovely appearance!!

Do you have an artificial limb already picked out?

I really want a running blade, those things look crazy fun

Careful with those blades. They've been linked to accidentally shooting your girlfriend in the middle of the night.

Well I will only have the one blade. So I will only be half as crazy.

How long till you can get one and be on your feet....errr... foot again?

I start getting fitted for a new leg as soon as the sutures are out, which should be in about 2 weeks

I'm assuming the pictures she posted included you doing some awesome events before you had the foot taken, so if that's correct, what was the most fun thing you did that you hadn't done or got to relive?

The most fun thing I did before the surgery was go skydiving with my girlfriend

Did you happen to catch Beck and Outkast at Firefly.... I thought they killed it.

I was in the VIP section for Outkast, it was amazing.

So... Was that the firefly music fest you were at in those pics your sis posted? Looked like it, hope you had a blast in Delaware if it was!

Yeah! Firefly was awesome. There was an employee there who heard my story and gave me and my lady free VIP passes for Sunday, which was amazing

How did you manage to remain so positive throughout the whole ordeal?

edit: Spelling.

I have an AMAZING support system. Between friends and family, it is easy staying positive. I also keeping looking towards the future when I will be able to run and play sports again

How long did it take to make the final decision?

Was your doctor/family supportive of your decision?

I visited the top doc at Johns Hopkins, and he basically said it was amputation or fusion. That is when I chose amputation. My family has been amazingly supportive. I am the luckiest guy to have them.

What do you mean by fusion?

Fusion would be screwing all the bones together so that my foot would not move. It had a 50/50 shot at taking the pain away, and it would have been a year-long process

I'm an orthopaedic surgeon and I have been dying to know more about how you arrived at this decision. Thank you for posting this. I can't imagine what you've been through with that ankle. Based on your attitude, I'd be willing to bet anything that you're going to have an amazing outcome. Best of luck to you.

Thank you very much! To arrive at the decision, I kind of looked at my entire life on a timeline. I drew out how long a ankle replacement would last, how long a fusion would last, etc. It basically came down to either going through surgeries for a good portion of my life to replace the parts that I break in my ankle, or have one surgery to end them all and be as active as I want on a prosthetic.
After 6 years of watching every sport I loved being taken away from me because of my ankle, the idea of taking my ankle away and getting the ability to play all those sports again was almost a no-brainer. On paper it was the logical thing to do, it just took me a little bit to get past the emotional piece. After that, I was good to go.

When did you first find out you had PVNS? I had (have?) it in one of my knees. I've had surgery twice now to remove it. The first time it was pretty bad and the had to do an incision on the back of thanked. The second time they were able to do it arthroscopically. Havent noticed any issues sincere second surgery fortunately. Hoping they got it all and it won't come back again, but well see. Never had radiation for it.

I found out I had PVNS 6 years ago after a wake boarding accident. They went in to clear out scar tissue and found the tumors. I am happy to hear that you have not seen it come back! I hope it stays away!

It came back the first time(hence the second surgery), but I'm hopeful it won't come back again. Found out about it in the first place when I finally went to the doc cause my knee kept hurting for no discernable reason. Got lucky both times. The first time I was on my dad's military insurance still so the military paid to fly me down to get the surgery. Second time, had noticed my knee starting to swell up and hurt occasionally again after a couple of years. This time, my wife was working at an orthopedic doctors office, so I got the MRI (to see that it had indeed come back) and the surgery for free. Just had to pay for the OR and anesthesiologist basically (and had my own insurance to help there). The second surgery was several years ago and I haven't noticed any issues yet, so I'm hopeful, but I know the odds of ot coming back are high. I need to go get another MRI again soon probably to check up on it...

My PVNS would come back 6 months after the surgery. If yours has been gone for several years I would think you have a good chance of it being gone for good. Good Luck!

It's so neat to see someone so positive with your position, just know it's okay to be bummed as well. One a side note, have any good puns or plans for your new setup?

I am most excited about what I will be doing for Halloween. I will be dressing as a surfer and my girlfriend will be a shark

Holy Shit! You're the first actual person I've seen that also had PVNS. And I though I had it bad! I'm a 28yr old who just had a total hip replacement in January due to PVNS. Half my doctors didn't even know what it was! How long did you have to deal with the symptoms of PVNS and have you met anyone else that had it? I had it for about six years and I also got to the point where it was bone on bone so I feel your pain. Got to the point where even going to get groceries was exhausting due to the massive pain. I just want to say that your humour and optimistic outlook are awesome as I know how hard it is to stay positive with the constant pain! Hope the phantom pain goes away soon so that you can also get back to living your life pain free!

It is so cool to see someone else with PVNS! It is so rare, I have never actually met another PVNS-er in person. I dealt with the symptoms for at least 6 years. Thanks for the support!

How long did you live with the pain before making this decision? Did you decide on amputation because of the better prospects for mobility on a prosthetic leg versus a fused ankle or was it more about eliminating the pain for certain?

I have constant pain from a crushed ankle a couple years ago....my doctor says a fusion may be in my near future. I wonder if I will be making a similar decision.....

Thanks for sharing.

I lived with the pain for around 6 years. I decided on amputation because it was the only decision that I saw that would allow me to keep my active lifestyle.
Good luck with your ankle! I am sure you will make the right choice either way!

Why Sorry Mom? Is that the one in Fredericksburg?

It is the one in downtown Fredericksburg. The tattoo artist, Ryan, was awesome. He did the tattoo for free!

Any plans of getting another witty tattoo?

"One foot in the grave" is the front-runner, but I am definitely open to suggestions!

How long has it been since the operation? Any ragrets since? Like do you miss your foot? I can't imagine missing a part of me that I've always had. Thank you for doing this AMA!

Thanks for asking! It has been about two weeks since the surgery. I do not miss my foot because it caused me so much pain.

What is the first thing you want to do after you get your prosthetic that you haven't been able to do because of the pain?

Run as fast as I possibly can

You've said you're having phantom pain - are you finding it worse, better, same as the pain you were having before?

To be honest, right now it is about the same. The weird thing is sometimes I can feel the pain I used to del in my ankle as phantom pain. The main difference between my old pain the the phantom pain is that the phantom pain is getting better everyday. My old pain got worse every day

Hey you're a brave dude! What has helped you the most to have a positive outlook given this whole ordeal?

The crazy amount of support from friends and my family

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Definitely, especially with the great prosthetics out there

DID YOU OR DID YOU NOT KEEP THE FOOT ?

NOOOOO. I WAS NOT ALLOWED. I TRIED.

I have mildly poor ankles and the... it's really only discomfort, usually, can be maddening. Was that any part of your inspiration for the saw jokes and tattoo? As in, "cut this b*** off before I do it myself"? They seem to have some seriously amazing prosthetics now. All the functionality, very little of the pain, hell, I'm almost sold. Do you feel a "ghost"? I hope these weren't too ghoulish or triggering in any way. Best wishes for a comfortable and maximal healing.

Yeah, I still can feel my ankle and foot. But I have been told that this will go away when I start getting fitted for a new leg

Whenever the nurses came back from getting his medication, he'd put on this beard and say, "What took you so long? I've been waiting here forever!"

That beard joke is hilarious. You're sense of humor and good spirits in light of such a difficult situation are inspiring.

If this doesn't get buried, how did you manage the uncertainty and any fears?

Thanks for sharing!

Thanks, I loved putting the beard on and messing around.

I tried to get as much certainty as I could, i.e. "I WILL run again." "I WILL play sports again." and focus on those. I was still scared and uncertain, but it did help to focus on the things I would be able to do afterwards.

Firstly, you seem like an awesome dude, taking this all in your stride and really making the most out of it.

When you look down where your foot used to be, is it weird to see nothing? What happens if you try to move your foot around? That would be so mind blowing.

What do you have planned next? What type of prosthetic are you going to look for?

Thanks! It is not too weird to see nothing where my foot used to be. Although sometimes I do forget and try to scratch my other foot with the foot that is no longer there! I can move my foot that is no longer there if I concentrate. It is pretty weird.