Elective amputation is a nerve-wracking decision. There’s no way to go back if it doesn’t work out, and there’s almost always other options to explore. The result is a constant temptation to exhaust every available option that isn’t permanent before settling on amputation. That’s where I am today. No matter how much you feel like it’s the right decision, the potential risks haunt you as long as alternatives are technically on the table.
First it was a tibiotalar ankle fusion. That got my foot in the right position, but it didn’t have a meaningful impact on pain. More recently, I’ve been trying prolotherapy and PRP. And now, with amputation scheduled a few days from now, we’re considering looking into an ExoSym orthosis. If there’s a chance it could work for my situation, it would mean another couple of months of delays, a couple of trips to Washington state, more money, and no guarantees.
At what point can you feel 100% confident that you’ve exhausted all options? That you’ve explored/invested in every reasonable alternative? I’ve generally told myself that I’m willing to try any non-surgical alternative, but if I’m going to have another surgery, it’s going to be the last one. Or, at least, the goal is for it to be the last one. But these days, it’s starting to feel like there’s always one more thing. What’s it worth to be just a little more confident that you’ve tried everything?
These days, the pain is pretty constant. The amount of pain varies, but there’s always some pain or discomfort. Even the sheets on my foot in bed frequently make it difficult to get comfortable. At events or doing activities where I’m on my feet a lot, I’m constantly looking for a chair. At times, despite the pain, I stand to offer my seat to someone else. However, the pain then dominates my thoughts and affects my mood. I’m unable to concentrate or enjoy the moment.
I’ve spoken with quite a few amputees at this point and read enough books, stories, and interviews with amputees. One almost universal commonality is that they all wish they had done it sooner. Of course, there’s some selection bias in there because it’s almost impossible to find stories about people who elected not to amputate. Since they didn’t amputate, life just went on like normal, and there’s not much of a story to tell.
If ever there was a decision that you don’t want to make purely based on emotion or gut feel, this is definitely one of them. However, at every step of the process thus far, I’ve ignored my gut feel and continued to try alternatives. So far, that hasn’t gotten me anywhere. I don’t want to be impatient or rash, but I also can’t help but wonder if I shouldn’t listen to my gut feel. My foot sucks, and right now, it controls way too much of my life.
It’s looking like we may be punting yet again this week. I feel as ready as I’ve ever been, but the obligation to exhaust every non-surgical option no matter how unlikely is weighing heavily on me. We’ll just have to take it one day at a time.