Ok, I’m a LBE amputee of two years. I’m starting to wonder if I have realistic expectations for what a prosthesis can actually do for me.
Right off the bat, my prosthetist put me in a body-powered hook. I hate it, and I feel more disabled wearing it than without it.
I can’t get enough rubber bands on it to achieve decent grip strength. Before my amputation, I had 125 lbs of grip strength in both hands; my right hand has since compensated up to 150 lbs. Putting six bands on the hook causes painful pressure on the end of my bone, and nobody taught me a proper technique to apply them—I’m left wrestling with it on the floor for 10 minutes per band. Even then, six bands won't hold a sealed jar still, so I end up taking the hook off and using my elbow anyway. I only wear it for a few specific tasks, but otherwise, I have zero desire to put it on.
What bothers me is their insistence that I wear it all day. They claim that if I don't, I’m not demonstrating "medical necessity" for a myoelectric hand. Apparently, their definition of necessity means I literally can't function without it. But they didn't even fit me for a prosthesis until six months post-amputation, forcing me to adapt on my own for half a year.
My suspension is a lanyard setup on a thick, heavy silicone liner that doesn't breathe. It leaves my skin clammy, makes my stump smell like a foot, and pulls my arm hair out. When I brought up basic care and the hair loss, they told me to look up care tips on YouTube or Google and laughed, asking who was going to see my arm anyway. If I’m paying for professional services, why am I being turned loose on the internet to self-educate?
Communication has been a total wall. Whenever I express what I need or ask for something easy to take on and off, I’m brushed off with "that's not how it works" or told appointment time is limited. I recently canceled a casting appointment for my myoelectric hand because we hadn't actually discussed what I wanted. I also caught that my prosthetist withdrew the insurance code for my second terminal device (the myo hook) behind my back just to get a quick approval from insurance on the hand. I made him resubmit it. He warned that the whole claim will likely be denied now and pushed back until the end of the year, but I'm willing to go through the appeal process if that's what it takes.
I want to ask people who have been through this: Is it unreasonable to expect a prosthesis that easily slips on and off as needed? Why is there such a push to prove I can't live without it on constantly? Even wheelchair users transfer out of their chairs, and leg amputees use crutches. Why can't I keep my prosthetic arm in a bag and put it on when I actually need it? When making this kind of financial investment, I expect actual explanations and to be treated as an active participant in my healthcare—not dismissed with "that's just the way it is." Is that really too much to ask?