When I was younger, I fought really hard against an amputation. I searched high and low for a solution to issues I had been fighting over my previous 7 surgeries. I finally found a surgeon who performed limb-sparing surgery on my left leg in 2004.
I was up on my feet and learning to walk almost right away. I rode horses hard all that summer cutting cattle and enjoying my new found functionality with my left leg. I felt awesome!
Prior to that I had walked on a broken femoral condyle (basically a broken knee) for two years. Prior to that I had had several reconstructive surgeries after the excision of an aggressive, yet benign, giant cell tumor of the left distal femur. I received adjuvant and cryosurgery treatment at the time. So, thankfully, I’ve never had a recurrence.
Over the last 5 years, my implant has repeatedly loosened aseptically (not due to infection). We don’t know why. I had a revision surgery in 2014, but that only worked for so long. The femoral stem of the endoprosthesis pistons and pivots inside of the femur during any sort of movement. Quite painful and unstable. It heals and then it comes loose – rinse and repeat.
After I quit my full time job in 2016, I was diagnosed with Undifferentiated Connective Tissue Disease (UCTD). I’ve done a lot of research (I read tons of journal articles), and it’s possible that the UCTD may be contributing to my body’s inability to grow good bone, and instead, contribute to bone resorption. It’s like the osteogenesis pathway may be a bit muddled. It would also explain why I’ve resorbed every graft I’ve ever had, both autograft and allograft. Anyways, if it’s odd or rare, my body likes to collect it.
The fix for what’s happening to me now is a revision surgery with a new part (Compress) at the end of the femoral stem of my endoprosthesis. Problem is, that requires resection of more of my remaining left femur. The odds of the surgery being successful are less than 50%. It also requires ingrowth and hypertrophy (calcification and enlargement) of the bone, and I’ve already established that my body has sub par skills at that. Finally, it makes me ineligible for future above knee amputation.
Which leads me to the crux of the situation here; I’m a super busy, active, productive type of person, and I am tired of the operating room, long rehabs, and basically being a Guinea pig. I fear the failure of the Compress surgery deep in my gut, and I can’t seem to go through with it. I’ve put the surgery off for an entire year. Due to that choice, I’ve most likely done more damage to the leg over the past year.
Instead, I’ve met a new surgeon who can perform an above knee amputation (AKA) on my left leg. He told me he could make me a good lever and that I would be able to do whatever I could teach myself to do. I like the idea of that. I’m the most disciplined, tenacious, willful, realist that I know. I think it might set me free. I think I may end up with more functionality than I have right now.
I’m not young anymore, but I’m also not old yet. Now is the best time to do this. This is about saving what’s left of my femur and my muscles.
If the Compress surgery failed, they would have to perform a total femoral replacement (TFR), and the functionality of that is probably still lower than I have now with my leg brace, a crutch, and walking like a penguin. (Personally, I’d dislocate that thing like I change my socks!) If TFR were to fail, that road leads to hip disarticulation. I feel like I cannot take any more chances. I need all the femur I’ve got.
So, let’s put away our grimaces and horror, and be proactive and practical here. Turns out research shows that limb-sparing surgery and amputation have about the same quality of life. I know, I was shocked.
On April 23, I undergo AKA. I’m going to make a metamorphosis. It’s spring! It’s time for me to quit running from my metaphorical “wolves”. I will turn and confront them, and toss them my lower left leg to chew on. I hope it satiates them and they will find new hunting ground elsewhere.