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!
I've been doing a lot of YouTube research on amputation over the last couple of months. I recently found an occupational therapist amputee that's made several videos of an amputation only a few weeks ago. Her videos provide unique insight into what it's like immediately following a below the knee amputation (BKA).
My first hard fall snowboarding was also the first time anyone heard my lungs make that noise. A gush of air departed my mouth − all of it − followed by loud, awkward moaning. With each grunt, I tried to take back in some of that air I so desperately wanted, but my diaphragm had called it a day. I'd obviously broken it. This was going to be my end. Death by catching my toe edge.
It turns out I'd only suffered temporary diaphragm paralysis, or what's known as getting the wind knocked out of you. Like most snowboarders just starting out, I had forgotten to lift my toes as I turned down the slope. Once the mountain grabbed the edge of my snowboard, my dumb face took one of the fastest trips back to earth its ever experienced.
Snowboarding is awesome. It gets even better as you hold fewer yard sales on the mountain. There's something about speeding down a top-to-bottom run surrounded by winter. The people are great, too. Lift attendants tell you to enjoy your run as they shovel snow under the chair. On the way up the lift, you learn where strangers are from and how long they've been at the resort.
It's the only thing that gets me in and out of bed early.
It's going to be a long road. The car's not even out of the driveway. But I cannot wait to get out there again and worry about not catching my toe edge.
In three operations over six months, orthopedic surgeons reconstructed my ankle with staples, stitches, screws, metal plates, a skin transplant, a bone transplant, and external fixators. Each surgery was painful. Each recovery was exhausting. Each setback -- and man, were there some setbacks -- took a toll. I've had more holes drilled in my leg than a Victorian home renovation project on This Old House.
It's the protocol. Save the leg and buy options. Amputate and lose them.
Ankle distraction arthroplasty was the most recent option we've endured. It came with two more surgeries, a third external fixator, and more pain. The risk was low. It didn't eliminate any other option in the ankle arthritis treatment protocol. The reward was potentially high. Pain relief.
Unfortunately, in the twelve months following the procedure, the pain increased and reached new heights. More setbacks.
I lost my leg the moment I snowboarded into that tree three years ago. When I tell people about my choice to amputate my right leg six inches below the knee, I'm greeted with concern, doubt, fear. Remorse. Why are you doing it? Have you run out of options?
I'm making a choice between 1) keeping my leg at the expense of a lifetime of more surgeries or 2) regaining my quality of life at the expense of losing a leg. I don't get to pick both. This New York Times article from last year does a good job explaining my rationale.
It's an easy decision on paper, but it was still emotionally challenging to ask Dr. Jeng, "can we amputate this leg?" It was a surreal moment when I heard those words leave my mouth in a hospital in front of a surgeon that can actually do what I'm asking.
I'm excited about what I'll gain with an amputation. I want to go on walks with my wife, run around with junior, reign over the basketball court, and strap back into my snowboard.
I face some hurdles between now and Cutting Day. I'm sure I'll have to justify my decision to friends, family, medical professionals, and even myself, for the rest of my life. We'll all have doubts. But I'm done with living in fear of pain and doubt. We're getting my life back, and I can't wait!
When I asked Dr. Jeng for the amputation, he asked Brooke if she was on board with my decision. She told him she was in favor of an amputation. Dr. Jeng was shocked. He told us he'd never seen a spouse so supportive of an elective amputation.
This is why Brooke dominates. I love that woman. I wouldn't be able to endure any of this without her -- especially the constipation.
As a kid in Tulsa, we'd beg our parents to drag us to Big Splash Water Park to escape the blistering summer heat. They had (and still have) the tallest water slide in Oklahoma -- the Silver Bullet. The Silver Bullet actually had a twin, but Big Splash kept it out of operation. The story was some poor kid flew off the other slide and met an unfortunate and premature end.
My anxiety and excitement would always grow with each step up the stairs. When I got to the top of the Silver Bullet and looked down, I had never been more certain in my life: this was the dumbest thing I'd ever done. On the way up I had the option of aborting the Silver Bullet for three mediocre slides. But there was no turning back. I had to take the plunge. The other slides weren't nearly as fun.
In the last several months, my ankle pain has gotten worse. I use a cane more often and acute arthritis now hits me on the medial side of the joint. Ankle replacement and ankle arthrodesis (fusion) promise short term relief. But the risks of failure are high, especially with my butter soft and piecemeal ankle. And the rewards are small. More surgery is a guarantee. These are mediocre options.
I've known this for a while. I need an amputation. I need a Silver Bullet.
Yesterday was my last visit with Dr. Jeng at Mercy Medical Center in Baltimore.
The x-rays show mixed results from the August 2011 ankle distraction arthroplasty. The anterior (front looking) comparison above shows an improvement in joint space. If you look at the medial joint space (on the left), you'll notice the gap is larger between the medial malleolus and the talus.
The lateral comparison isn't as good. There's no noticeable improvement in the joint space. It appears the anterior portion of the tibia is in direct contact with the talus.
There's no doubt, the distraction arthoplasty is adding joint space. But it's not doing anything for my pain, and that's all that matters. Dr. Jeng agreed.
I asked if we could move forward with an amputation. Dr. Jeng agreed. Of the three options it's the only one that can get me back to snowboarding, running, and my normal pre-accident routine. But Dr. Jeng won't be performing the amputation. He hasn't done one in several years and told us that he sucks at them. Instead he's referring us to a vascular surgeon. Dr. Jeng said he could connect us with some guys he knows, but he suggested we find someone closer to home. He asked that we find a good vascular surgeon and a better prosthetist.
So I've got my referral. Because I've got a PPO, I technically don't need it -- but because this is an elective amputation, I probably need it to convince the vascular surgeon. It's a little surreal to read this referral. I'm at the top of the Silver Bullet. It's scary. It's frightening.
But I can't wait to jump.
I can't wait to run.
I can't wait to snowboard.
Yesterday was my last visit with Dr. Jeng. It was surprisingly emotional. That guy rocks. He asked that I stay in touch over email and let him know how things work out. I'm going to miss working with him.
After the appointment Brooke and I decided to ease up on the gravity of the day and hang out at Eastern Market and buy some food.
Then we finished it with a couple of drinks to figure out our next steps.
I haven't updated the blog regularly in a while. Frankly I didn't have much to say. Just that the pain was getting worse. That's too depressing!
I'll be updating more regularly now that things are picking back up. My next couple of posts will provide some details about what I can expect with a below the knee amputation (sometimes called BKA or BTK). My plan is to learn more about the procedure and start shopping around for awesome vascular surgeons in the local area.
I also wanted to thank everyone for the awesome support. I'm really excited (and scared) about the next and hopefully last step to recovery. But I know this is the right thing to do. I can't wait to get back to normal life. I can't wait to take the plunge!
I know! Dude, I know. It's been a while. Here's the deal. I've been trying really hard to live my life like I don't have an ankle problem.
How's that going?
Turns out it's unavoidable. I've got an ankle problem. More to come. But 2013 will be a big year.
In the meantime, here's a video I put together of a recent sailing trip to the British Virgin Islands. If you have ankle problems, go sailing. It's easier to move around on the boat than you think. Much easier than a lot of walking.
After one year, ankle distraction arthroplasty has helped reduce my pain. I no longer hear and feel bone-on-bone grinding. My average daily pain was reduced from a 5 or 6 out of 10 to about a 2 or 3. But more on my pain later.
I visited Dr. Jeng at Mercy last Tuesday to discuss the progress we've made over the past year.
Here is a comparison of last week and a visit in April 2012. It's a little difficult to see an improvement in joint space.
The anterior comparison is clearer. Dr. Jeng indicated he saw a slight improvement in joint space medially. I'm wondering if that dark spot under the arrow is an osteochondral cyst or a space left in the bone from the pelvic bone allograph transplant.
Here is a comparison of last week's x-ray with one from before the distraction arthroplasty in June 2011.
Same deal -- anterior view. This comparison is pretty good. You can see the talus is no longer touching the tibia on the medial side.
What about ankle flexibility?
This was taken right after the external fixator was removed last November.
This was taken tonight. The plantar motion is epic, but the dorsiflexion is probably only a degree or two above 90. Spunky digs it.
Now what about pain? It all depends on my activity level. To help keep track of it, I've been trying different pedometers.
The Tanita FitScan pedometer saves steps from the previous 14 days. I've recorded every day's step count since May 2012 (with exception to a week earlier this month) to help measure my progress since the surgery.
You can see a local pattern in the chart above -- each day's spike is usually followed by a low count. The more steps I take and time I spend upright, the more I pay for it the next day with increased arthritic pain. Fortunately, the pain subsides with rest. Overall, though, the step count each day rarely reaches more than 5,000. Some low step counts are a direct result of too much pain while other low counts are due only to the anticipation of pain.
Here are my average step counts over the last four months. May's count was 4,537, which is very close to two miles given my height and stride length.
My pain management plan has changed since I last updated the blog. Earlier this year, I used Celebrex to manage pain. But I've recently switched to Tramadol (Ultram).
Ultram is great for days when rest is not an option. I tend to go through periods of Ultram use lasting several days with longer periods without it. I suspect it's because I'm able to push my activity level higher while taking it which results in increased pain the next day.
Where are we after one year? If I was happy with my current activity level, I'd say we've made huge progress on my ankle. Unfortunately I have a few problems with where we're at today:
I want to be able to stand for longer than 60 minutes straight without needing significant rest the next day.
I want multiple days of activity without pain (no rest days). Airport travel kills the first day of vacation.
I need more ways to get my heart rate high enough during cardiovascular exercise. Swimming is great, but it's usually inconvenient.
It's still unclear whether I can snowboard in my current condition. I imagine I could only do one run down the mountain before riding my toe edge resulted in too much weight on the anterior part of the joint.
What's our game plan going forward? Dr. Jeng and I will continue to monitor the ankle for any signs of clinical improvement over the next 12 months. Recall that patients that undergo ankle distraction arthroplasty can show clinical improvements for several years after the procedure.
If after 12 months we see no clinical improvement or we see an increase in average pain, we've both agreed a below-the-knee (BTK) amputation is our best option for me to return to a more active lifestyle. This CT scan indicates ankle replacement is not an option -- the bone stock is terrible. An ankle fusion will most likely have the same three issues identified above with the increased risks of adjacent joint arthritis and more surgeries.
I'd think I'd be very excited to have an amputation, though I need to continue speaking with amputees. It probably sounds crazy, but imagine doing nothing all day not because you're in pain, but because you feel great and you don't want to ruin it.
