Surgery Six Scheduled

The Cookie Monster will make sense at the end of this post.  Word-smithing magic.

On Friday, June 14th, 2013, I will walk into Georgetown University Hospital with two legs and leave it a few days later with one.

That's in only 38 days.  I've got a growing to-do list before the gauntlet comes down.

Next week I've scheduled appointments with a pain management specialist, Dr. Netsere Tesfeyohannes, and my family physician, Dr. Didace Kabatsi, for a physical.  I know, it's an alphabet soup of doctor names.

I still have not locked up a prosthetist.  I spoke with Dr. Attinger's nurse, Kathryn, today on the phone to go over some questions I had.  While we were talking she reminded me that finding the right legman is important.  It's like a marriage.  Dr. Jeng said the same thing in March.

No pressure.  It's just the single most important decision I will ever make (behind marrying my wife, of course, and whether or not I should wear those jeans again).

"We use nine dimensions of compatibility to find your dream prosthetist!"

Finding "the right" prosthetist is a challenge.  I have no idea what the red flags are to signal a "bad" prosthetist marriage.  What I need is a dating website for amputees and prosthetists.  I posted a message on the Amputee Coalition of America's Facebook page to ask other amputees if they had recommendations for how to meet Mr. Right.  Because I have no idea what I'm doing.

Based on the responses I'm getting, I've noticed amputees will drive long distances to see a good prosthetist.  Several people, including Kathryn, recommended Elliot Weintrob at Orthotic Prosthetic Center in Fairfax, VA.  I'll schedule something with him tomorrow.  Amputees apparently fly in from around the world to see him.

But back to the surgery.

When I show up to the hospital in June, Kathryn confirmed I'll get my pre-game epidural.  Then, on Tuesday, we'll lop off the leg.  Once my pain is managed with oral medication, I'll be discharged and possibly admitted as an inpatient to the National Rehabilitation Hospital nearby where I will continue to learn I no longer have a right leg.  This will help reduce the likelihood of accidents when I return home.

Whether or not I'm admitted depends on how well I rehab.  And my genetic clumsiness.  I mean, we're here because I snowboarded into a tree.  When the Vegas odds-makers draw up the accident lines for me, there's no way they'll favor a clean record.

The amputation will be about 16cm below the knee.  Here's a picture to help put that into perspective.  This appears to be halfway, but it's actually much closer to the knee than you think because the foot is further away in this picture.

Okay, so this was a terrible picture to use.

One of the biggest items on my to-do list has been the oh-so-simple task of a total lifestyle change.  My wife and I started working on this in December when I finally decided I had had enough with this ankle.  In December I was a svelte 225 lbs.  For a guy that's 6'3", my body fat percentage was creeping past 27%.  That's several miles safely within the borders of obese territory.

My diet was awful for someone that had such a hard time working out.  I devoured all of the carbohydrates and processed food I could get my hands on.  The diet worked for me, so I thought, because I didn't have to spend too much time up on my ankle cooking.  Just throw in a box of frozen burritos into the microwave and enjoy life!

But all the weight I gained had the opposite effect.  My back pain, already bad because I can't push off with my right leg, got worse.  I stopped biking and lifting.  I began to worry I was stuck in a vicious cycle.

I lost hope of ever snowboarding again.  Instead, I was apparently training as Cookie Monster's backup, ready to come up off the bench at a moment's notice to eat frozen burritos (word-smithing achievement unlocked).

My wife and I drastically changed our diet in December.  And it's a permanent change.  Our new diet has a name, too.  Paleo.  I cook regularly and dominate at it.  And it's amazing how much better it tastes than that bean burrito in a box.  Many of our meals are vegetarian.  Since starting the diet, I've dropped 21 lbs.  My goal is to be around 195 lbs for the amputation.  This will make sure the prosthetic fits comfortably on my residual limb.

I also started working out again last month to ensure my core, legs, and upper body are all ready for the amputation.  I've been telling people that I will be in the best shape of my life after an amputation -- not before.

Getting an amputation has been the easiest decision I've ever made.  It's made the importance of diet and exercise more immediate and real.  But I'm not dumb.  I suspect this will be a hard decision to live with.  It's going to be really painful.  I know that.

But it will be worth it.

Original Gimp

Today I discovered The Original Gimp, Lucas Grossi.  He had a left below-knee amputation when he was 12.  He started and fell in love with snowboarding after his amputation.  In 2000, he created para-snowboarding.


Earlier this month, the Paralympics announced para-snowboarding, or adaptive snowboarding, will be an event in the 2014 Paralympic Winter Games.  Lucas finds out if he made the team in a few weeks.

His website had great information for both below-knee and above-knee snowboarding leg assemblies.  For me this was an awesome find.  Without it I would never had known which leg setups work best for snowboarding.

While I was searching for information about amputee snowboarding, I also came across this new leg prototype.


This was the leg Russel showed me two weeks ago.  Amputee technology is so impressive.

The Guy That's Going to Cut My Leg Off

Collegiate Lumberjack Ryan Farr of Alabama

You probably already know collegiate lumberjack Ryan Farr.  He dominated the the Stihl Timbersports Series.  The man is a legend.  And while Ryan could handily remove my leg in just shy of two seconds, we've regrettably decided to go in a different direction.  

I'm sorry, Ryan.  We won't be using my leg in this year's Hot Saw competition.

Enter plastic surgeon Dr. Christopher Attinger.  Yesterday morning Brooke and I met with Chris and his team at the Georgetown University Hospital's Center for Wound Healing.  I went over the last three years of surgeries and explained my current pain situation.  After I finished telling my story, Dr. Attinger nodded his head and said he 100% agreed with my decision to amputate.  In his words, I gave it the "good ol' American try."  He went on the say that today's surgical culture continues to place too much emphasis on salvage without considering its impact to function.  What's the point of saving a foot if you can't use it?  

I was swooned.  

Dr. Attinger has developed a specialized below-knee amputation technique over the last few years based on the Ertl procedure.

The Ertl procedure is a below knee amputation technique where a bone bridge is formed between the tibia and fibula after the leg has been amputated.  The surgeon amputes the leg and uses a portion of the fibula from the amputated leg to create a bridge, as you can see in the image above.  The Ertl procedure is used almost exclusively on returning veterans with traumatic injuries below the knee.  According to Dr. Attinger, the bridge makes it easier to apply torque to your prosthetic and creates a strong foundation in the residual limb to bear weight.

Dr. Attinger explained how he dissects the calf muscle and attaches them to the front of the tibia.  This allows what's left of the calf muscle to continue acting like a pump for the blood flowing through the limb.  Immediately following the amputation, this technique reduces edema and swelling.  That helps reduce the pain.  The longer term benefit is a dramatic reduction of the risk of atrophy, bone loss, and bone brittleness in the residual limb.

Given a target date of mid-June for the amputation, Dr. Attinger said I'd be walking by August 1st.  Not bad at all.  We asked Dr. Attinger about how we'll manage post-operative pain.  He referred me to a pain specialist to develop a plan for managing the pain after the surgery.

Dr. Attinger also explained that I'll be admitted to the hospital for five days to receive an epidural.  Brooke and I were thrilled to hear this.  In our cursory research, we've observed that elective amputees appear to better handle phantom limb pain when they are treated for their real pain symptoms several days before the amputation.

The goal of the epidural is to make my brain forget about the ankle pain I deal with every day.  This takes about five days.  Without the epidural, there's a higher risk that I'll continue to feel the daily ankle pain I've got now after my limb is amputated.

Weird, right?  Phantom pain is ridiculously weird.

So, five days in the hospital with a tube in my back continuously feeding it opiates.  That means I won't be able to feel anything below my belly button.  For five days.

Ask yourself this question: what's below your belly button?  Specifically, what two bodily functions must you operate below your belly button on a daily basis?

It took me a while to figure this out.  I think after a few hours I realized I'd need a catheter inserted into my bladder.  No big deal, having a catheter was awesome.  Complete urination freedom.  I had one after my first surgery and loved it.  I wish I had one every St. Patrick's Day.

But for some reason, it didn't dawn on me until today.  Who does number two work for when you're facing a five-day epidural?

The exact thought that went through my head when I had this realization about Number Two.

I can tell you who he doesn't work for.  You.

That's right.  With an epidural, Number Two is self-employed.  I'm no longer Large and In Charge.  I don't set the schedule.  And the humiliation doesn't stop there.  Not only do I not set the schedule, but I won't know when Number Two is taking a break (if you catch my drift).

How sad is it that I'm totally cool and excited about the amputation, but scared to death of the epidural? Because that's exactly where I'm at.

Brooke tried to cheer me up by reminding me that opiates will back up traffic on the Tony Turnpike.  So the epidural shouldn't be too traumatizing.  I'm holding out hope that there's some way of preserving control over my bodily functions while I undergo epidural analgesia.  But soon that may be the only thing I'll be able to hold onto.  Brooke's convinced I'll be in charge of my situation because five days of "self-employment" seems a little rough.  She's a nurse practitioner, so I trust her judgement.  I have to believe she's right.

I have to.  But Dr. Attinger did specifically used the word, "epidural."

So, in summary, I think I've found my surgeon on the first attempt.  He had a great team, awesome bedside manner, suburb credentials and experience, and agreed with me (that's the most important quality).  His surgical scheduler will contact me in a few weeks after they've worked out the paperwork with my insurance.  The game plan is to schedule the amputation for the first week or two in June.

In the meantime, I'll spend the next six weeks interviewing prosthetists.

I was able to meet with another one yesterday in Dr. Attinger's office -- Charlie Crone. He's the Clinical Director of Prosthetics at the hospital.  He was extremely personable and has over 30 years of experience.  I'll update the blog in a few days to go into more details on our discussions with Charlie.

Snowboarder vs. The Prosthetist

The 2013 Prosthetist & Vascular Surgeon Tour has officially begun.  Last Friday we met our first prosthetist, Russel De Palma at Medical Center Orthotics and Prosthetics in Silver Spring, Maryland.

In the last year or so we've talked to many below and above the knee amputees.  But this was our first encounter with a prosthetist.  Something about an official meeting with a prosthetist made the impending amputation seem more real.

Every amputee makes it a point to tell you how important it is to find an awesome prosthetist.  Even Dr. Jeng made that point.  And rightfully so!  For the rest of my (pretty fabulous) life, my prosthetist will fabricate my legs, custom design suspension systems to hold them onto my residual limb, and make fine tune adjustments to ensure a comfortable fit.

It's really not that much of a stretch to say my prosthetist will be the key to enable me to live my life as I deem fit.

Russel came into the meeting and asked us if we'd be willing to sit through a prepared presentation that covered some of the science behind modern below-the-knee prosthetics.

That's one check mark in The Column of Awesomeness.  My name shows up next to science in the dictionary.


Russel started his presentation with the BiOM prosthetic leg.  It's a leg born out of research and investment into technologies that ensure returning veterans receive the best prosthetic technology available.  The guy that invented it, Dr. Hugh Herr, is himself a double below-the-knee amputee.  When you get a moment, watch his TED Talk video.  Here's a teaser: he created custom prosthetic limbs that put him at over seven and a half feet tall to help him with rock climbing.   I'm hoping my prosthetic will help me return to throwing down monster slam dunks on the basketball court. Russel explained to us that he heavily favors vacuum suspension technology.  This is where your residual limb and prosthetic socket are held together with the negative pressure of a vacuum.  The pressure is carefully measured and maintained by your prosthesis with a pump in your ankle joint that activates each time you take a step.  This technology allows for greater surface area of your residual limb to come into contact with the socket, which in turn helps reduce the perceived weight of the leg.  In other words, vacuum technology makes your prosthetic leg feel lighter and more normal.  It also helps reduce problems associated with sweating since the negative pressure apparently prevents your sweat glands from perspiring. When Russel asked me about my goals once I become an amputee, I went straight to snowboarding (no surprise there).  While I want to return to walking, running, and biking, snowboarding is the ultimate goal.  Russel did a great job making it seem like that goal would be trivial to achieve. Check mark. He explained to me that he's recently established a relationship with a local company that manufactures custom prosthetics just for snowboarding and showed us a picture of one of the custom legs they had just made for an above-the-knee amputee snowboarder.  Russel also mentioned that I could join a group of Walter Reed amputees that go snowboarding every winter. For those of you keeping track at home, that's three check marks in the awesome column.  This was probably the first time since my accident I have been this genuinely excited about what's in store for us this year. Russel seems like his number one priority is patient advocacy.  We were really impressed with his presentation, knowledge, and amicable personality.  If all prosthetists are like this, our decision is going to be a tough one. So, the tour is off to a great start!  Next Monday we visit with our first surgeon, Dr. Attinger at Georgetown University Hospital.  Russel mentioned he's a pretty big fan of Dr. Attinger. Before I end the post, I wanted to update you on an amputee I met on YouTube/Facebook.  She got her amputation in February and just started walking on her new leg!  Here's a video of her taking some of her first steps.  

Snowboarder vs. Viewers Like You

This Blog is Supported by Viewers Like You

I started Snowboarder vs. Tree seven days after the accident with a post entitled Pictures of The Strongest Ankle Known to Man.  The purpose of the blog was to keep friends and family updated on the surgeries and recovery (and frequently gross them out with gory pictures).  Writing stupid posts while taking medication also helped pass the time recovering on my butt.

I thought I'd be providing updates to everyone for only a few months until my recovery was complete.  I'd have one final post about my triumphant return to snowboarding and then call it a day.  But as we found out, snowboarding into a tree turned into one of those life changing events.  And by far the best thing about writing for this blog for three years continues to be meeting some awesome people going through similar struggles.

So I wanted to take a moment to stop talking about me and share some of their stories with you.

Richie

Meet Richie.  I need to warn you up front.  He's a Phillies fan.  Like me, Richie had an unfortunate encounter with a tree in July 2010 in his car.  He ended up with a similar pilon fracture of his left ankle.

Richie had a couple of surgeries to fix up the fracture with plates and screws.  Unfortunately, like me, he's in a lot of pain every day.  We both use canes to get around and we're both scared of walking or standing for too long.

So Richie is considering his options.  Fusions and ankle replacements seem like poor choices to Richie because it limits his activity.  It's almost no better than walking with a cane.  He's also considered a below the knee (BTK) amputation, but that's a permanent solution.  So, like I did in 2011, Richie's going to try out ankle distraction arthroplasty.

We've been talking back and forth about our recoveries.  It's amazing how much it lifts your spirits to find someone going through similar physical and emotional pain (physical pain really wears you out).

He just found out today his surgery is on April 18th!  In addition to the distraction arthroplasty, Richie's surgeon is going to use something called a Denovo cartilage graft.  I asked Dr. Jeng about it recently.  It's a new procedure where a small amount of cartilage tissue is taken from a donor and inserted into your joint.  It's typically used to fix adhesions or holes in bone and less frequently used for distraction arthroplasty.  Dr. Jeng mentioned that because it's so new, he sees insurance companies refuse payment for Denovo.  His practice frequently ends up eating the cost for patients that use it.  (Richie I think I forgot to mention this to you -- double check before your surgery next week!)

Good luck, Richie!

Tricia

Meet Tricia.  I need to warn you up front.  She's an avid skier (member of the Whitetail Ski Patrol), so I'll need to make sure this part of the post is simple and easy to follow.

Unlike me and Richie, Tricia has avoided smashing her ankles on trees.  Her problems developed from overuse injuries growing up as a young athlete.  She'd regularly run seven miles between ski team practice and dance class.  She ended up with bone spurs and had two surgeries to correct it.

Several years later, in her early 30s, she twisted her ankle playing soccer.  That's when the wheels fell off the cart.  She had three surgeries with Dr. Neufeld in Virginia (where I saw Dr. Buchanan) and five surgeries with Dr. Cooper at Georgetown.  Her most recent surgery with Dr. Cooper replaced her ankle joint with a STAR ankle prosthetic.  Unfortunately, from day one, the ankle replacement caused Tricia problems.  Her tibia and talus were no longer parallel, which led to severe back problems -- including a herniated disk.  She also had what sounds like a frustrating time with Dr. Cooper, who said she could always have her ankle fused after it was replaced.  Now that she's had it replaced, he's told her she is not a good candidate for a fusion.

Tricia mentioned to me that she is a friend of a friend of Don O'Mara.  For those of you reading the blog without ankle problems, you probably don't know who that is.  But the rest of us do.  He was the first person in the US to receive the STAR ankle replacement at Georgetown with Dr. Cooper.  That article I linked describes the replacement as a huge success.  But as Tricia found out, several years after his replacement, Don has really struggled.  And of course there are no stories about that out there.  I've reached out to Don to see if I could ask him some questions for the blog in the hopes that we can get his updated story out to ankle arthritis sufferers.

Because Tricia is going through quite a bit of pain, she's now also considering her options.  She's consulting with Dr. O'Malley in New York to look into fusion or a different ankle replacement called INBONE.  If neither of those options work, she's going to get her amputation in June with Dr. Attinger at Georgetown.  She thankfully recommended a highly regarded prosthetist and plastic surgeon since she lives in the same area -- Dr. Attinger at Georgetown.  We'll be meeting with a prosthetist Friday morning together to go over our questions.  Brooke and I are really excited to meet Tricia and our first prosthetist.  I'll be sure to let you all know how it goes!

Meeting Tricia has helped us get started on planning the amputation.  And since it appears we're both competitive people, and because she's a skier and I'm a snowboarder, it looks like some amputation recovery competitions are in the cards for 2013.

First person to walk?  The snowboarder.  First person to run?  The snowboarder.  First person to fall off the lift during our triumphant return to the slopes?

The skier.

Meg

You may have already met Meg.  She's left some comments on the blog recently that just utterly floored me.

In 2008, Meg fell five stories when the railing she was leaning against broke in an open air hallway in her college dormitory.  Five stories.  Five.  As she puts it, she broke, well, everything.  Toes.  Feet.  Crushed tibia and fibula.  Right kneecap.  Both femurs snapped.  Ribs.  Jaw.  Like I said.  EVERYTHING.  Today, Meg is able to find humor in her accident by telling people she dropped out of college.  But she is extremely fortunate to still be here with us.

Meg also lives in the Baltimore/Washington area.  Last month, she had ankle distraction arthroplasty at Mercy with the Institute for Foot and Ankle Reconstruction.  She's not seeing Dr. Jeng, but she did meet him after her surgery.  She told him she recognized his picture from the blog!  He apparently got a big kick out of that.  Dr. Jeng told Meg he was glad she found the blog and that it has helped her prepare and cope with the ankle distraction.  I'm really glad you found the blog, too!  She's probably one of the few people on the Internet that find the external fixator videos on YouTube interesting and relevant.

Meg -- your story is truly inspiring and I hope you continue to keep us up to date on your recovery.  All of us that hang out on this blog are totally rooting for you.

There have been many many more people I've met on the blog with amazing stories.  Sharing this injury with all of you has helped me with my recovery more than you'll know.  It's been a genuine source of strength.  I'm looking forward to hearing how all of your recoveries go, and I'll be sure to keep you all updated on cutting of the leg.

I will keep updating the blog as long as I'm recovering.  There will be plenty more to talk about and share.  But one day, there will be The Last Post.  And it will be me on a board dominating the slopes with one leg.

Snowboarder vs. Opening Day

The week started with one of the most important days on the 2013 calendar: Nationals Opening Day.  Events like this usually bring out my ankle anxiety.  But this is one of those moments when you don't care what it costs to be up on your ankle all day.  Stasburg is on the mound and Harper is in the three hole.

Before the pre-game festivities, we enjoyed some local fine dining on Capital Hill at Pete's Diner.  Looks like someone was pumped I didn't steal any of her bacon.  

I am too dominate of a corn hole player these days, so I'm forced to sit on the sidelines and watch.

 The stilts guy.  He seemed pretty happy to have not fallen over.

Before we were even ten steps in the ballpark, we were asked for interviews to give our expert opinions on who the most improved player will be for 2013.  We're really hoping it's Espinosa.  Seriously, you need to calm down those strikeouts.

We were at Game 4 last year.  It was incredible.  Best baseball game I've ever seen.

This is why.

In case you've never heard the awesome radio call by Charlie Slowes, here you go.  You're welcome.

Our view from our seats was great.  We were above the out-of-town score board in right field.

The Shake Shack line is one the the longest in the entire ballpark.  This was our view for about four innings.  When we left the game they were still open serving people that had waited in line all game.

Left Ankle vs. Right Ankle

A few months ago I purchased a Go Pro 2.  You can mount it just about anywhere.  Earlier this evening I mounted it to my feet to compare the two ankles in motion.

First here's my good ankle.  Sorry about the sound.  I slowed down the videos to better capture the motion.

Now here's the bad ankle.  It barely moves!  My dorsiflexion is about 90 degrees, so there's not much movement while I walk.  Most of my pain is on the lateral side of the joint (left side in this video), though I've developed some acute pain on the other side now which affects me while biking or driving.

This weekend we attended the DC Beer Fest with some friends at Nationals Park.  I was up on my feet for a little over 4 hours straight.  It was a lot of fun, but I could barely walk the next day.

This is one of the three baseball in motion statues that greets you when you enter the park.

Our friend Laurel and her boyfriend Kevin were in town.  Kevin's a fighter pilot.

A very professional fighter pilot.

Opening day is on Monday!  We're skipping work to see the National's play dominate Miami.  Attending games usually does a pretty good job destroying my ankle for a few days, but it's totally worth it.

Here's Brooke with our good friend Crystal.  The mustache was some kind of promo for one of the beers we tried.  Crystal recommended I have a foot signing party before its amputated.  So far she and I are the only ones that think this is awesome.

No news to report on finding a vascular surgeon or prosthetist.  I've been talking to a number of amputees about their experiences to help gain an understanding of what I need to look for.  The goal is still to amputate sometime this summer.

I'll let you know when the foot signing party is scheduled!