About two and a half years ago, recovery from a relatively minor surgery went a little bad. Eight surgeries and year and a half after that I was seriously considering a below-knee amputation. After several discussions with multiple surgeons, physical therapists, amputees, and prosthetists, I agreed to try an ankle fusion first. I wasn’t excited about it, but it made sense. That ankle fusion happened about nine months ago. It helped. But nowhere near enough.
If you’re not familiar with ankle fusions, it’s a virtual guarantee that running or jumping off of that leg again is out of the question. An ankle fusion can reduce pain, but only at the cost of giving up a lot of activities. As someone who deeply loves playing basketball, that was a tough pill to swallow. I thought maybe some other activities could replace it. So far, biking has been the only activity that doesn’t cause unbearable pain, and mountain biking has become my mainstay for fitness. Unfortunately, that’s limited by weather and won’t be enough by itself. Earlier this week I tried snowboarding again for the first time since my ankle fusion. The pain made it impossible to enjoy. Going into it, I had a feeling, but that sealed the deal. If I can’t do these activities on my own, I won’t be able to keep up with the girls as they grow up. (Barring any miracles in the coming months, of coure.)
So barring that miracle, I’m again moving towards have my left leg amputated below the knee in the coming months. This is ultimately a fairly elective decision. I could choose to live with the moderate pain on a day-to-day basis if all I did was walk short distances on flat surfaces, but I’d never be able to truly be active again. Given the semi-elective nature of it, it feels like most surgeons are hesitant to fully support the decision. I can appreciate that, but with two young daughters and a wonderful wife who deserves all the help I can possibly provide, settling with the pain would prevent me from enjoying life and being everything I can be for them. I’m not sure I could live with that. Of course, amputation carries its own risks, but it would really be the first “standard” surgery I’ve had since this all began.
As extreme as amputation sounds, if everything goes well, it will actually be an upgrade for me in terms of functionality and pain relief. I’d lose my proprioception, which is a considerable sacrifice, but the net improvement should be good. As it stands, I already don’t have any ankle movement. But I still have plenty of pain. With a prosthetic, the chances of the pain going away are very high. There is a very realistic chance of phantom pain, but we’ll be doing everything possible to mitigate that. So with a prosthetic, I should gain functionality and decrease pain.
This week, I’ll meet with some surgeons and another prosthetist to start working out the details and making sure that all reasonable options are exhausted. With Spring and nice weather coming up, a few other significant life events, and knowing that the recovery will take at least six months, it’s looking like the timing will work out to a late April date for the amputation. That gives me plenty of time to exhaust all of the remaining long-shot options.
During my journey of the last couple of years, I’ve had a hard time finding stories of people in similar situations, and the few stories I have found and people who I’ve been able to speak with about amputation in general have been so incredibly helpful. In particular, Ian Warshak, who is a double below-knee amptuee and recently completed an eight-day round trip hike to the peak of Mt. Kilimanjaro, has been an enormous source inspiration and reassurance that life doesn’t “end” after an amputation.
In addition to those conversations, reading Stronger by Jeff Bauman, On My Own Two Feet by Amy Purdy, and Unthinkable by Scott Rigsby, the first double-leg amputee to ever cross the finish line in the Ironman Triathlon, were all incredible stories that helped me understand the realities of amputation as well as the confidence that an amputation can improve one’s life. (No guarantees, of course.)
I can only hope sharing this process could help anyone else that may be facing a similar decision. So I’ll do my best to document and share all of the ups and downs in the coming months and years in case it can help someone else the way all of these stories helped me.