By Emily Harvey
For this blog I interviewed my friend Alina Miller who elected to have her leg amputated following a traumatic injury. Everyone’s situation and circumstances are different, but hopefully others might find Alina’s story helpful in their own journey whether that journey involves choosing between amputation and saving a limb or any other tough decision you may be having to make in your life. Alina has come out the other side of her tough decision as such a strong and beautiful woman, and I am so lucky to call her a friend.
How did you sustain the injury that ultimately lead to your amputation?
In 2012 an arsonist set fire to my apartment building and I was forced to jump from the 4th floor to the concrete. I broke both my feet and back, badly.
How long did you try to save your leg and when did you decide amputation was the right path for you?
In January of 2016 after 3 years of surgeries on the left foot, I opted to have it surgically removed below the knee.
What was the experience of trying to save you limb like for you?
I didn’t realize it until later but I was just in a limbo. Constantly preparing for, or recovering from a surgery. At my initial injury, I lost a ton of weight and went down to 87 pounds, I struggled to gain it back over the next few years. For one of my surgeries I got osteomyelitis and was on a PICC line for 3 months. It was the sickest I have ever been, I lost all energy to even stand up. I slept on the couch because it was too much effort to move from the bed. With each surgery, my foot gradually became more and more either nerve sensitive or nerve dead, and was wrapped with scar tissue. I spent all of my early twenties on crutches and in a fracture boot. My then-boyfriend (now husband) was incredibly active when we first started dating but once moving in with me he gained a bunch of weight from living the sedentary life. We went on vacations, but he had to carry me or we had to sit constantly. If I pushed it, any activity meant I had to suffer the consequences later. So say I went on a walk with my mom, that meant I was going to be swollen and couch-bound the next day.
When/why/how did you decide that amputation was the best route for you?
When considering my 8th surgery, I realized I couldn’t do it anymore. My toes were so wrapped in scar tissue that my pinky toe was rotating out and sticking out of the side of my foot and I had developed ANOTHER bone spur in my Achilles tendon. We were about 8 months away from my wedding, so I decided to go ahead with the spur removal and pinning my toe back in place (so I could wear shoes), with the plan that a year after my wedding and honeymoon I’d have the amputation.
How did you feel once you made the decision to amputate?
Initially it was a horrifying prospect, but then I spent the year doing research. I spoke to new people, learned their experiences (like you, Emily!) and did everything I could to be an informed patient. I gradually began to feel excited, like there was a light at the end of the tunnel. It felt like there was a chance, a place in the world for me.
How did you feel when you woke up after the amputation?
Joy. I felt calm and happy going back and felt the same way waking up. My nurse happened to be the same nurse my friend had a few years ago so we took a selfie together upon me waking up. The first day was great, I had visitors and ate lunch and was happy. The next day was another story because the nerve block wore off and I became a different person. I was in so much pain I couldn’t settle down, I was in constant motion and could not stop crying. It took 2 hours and 3 different types of medication to bring me down again, after which I was exhausted. I could have gone home, but I asked to stay in, knowing if that happened again at home it’d be an emergency. They installed two more pain blocks, one on the side of my groin and the other under my left butt cheek before I went home and that helped a lot.
How would you compare your pain level post-amputation to your pain level during limb salvage?
100% less pain. The first month I was in pain, but it was the nerves acting out from losing my leg. I felt like there was a lighter being held under my toes, 10 seconds of blinding pain. I got what I call “zingers” lightening pain running up my leg. But after that first month, it quickly got better. I’m 13 months out now and have no pain. Occasionally I get a zinger but it’s a total blip on the radar.
Are there any activities you’ve been able to do as an amputee that you couldn’t do during limb salvage?
Literally everything. Since becoming an amputee I’ve wakeboarded, snowboarded, rock climbed, hiked, scuba dived and I even started beekeeping! Things as mundane as being able to walk the grocery store with my husband are possible when during limb salvage that would have put me out for days. When we’re invited to go out with friends I don’t have to hesitate and wonder if I can keep up. Shoe wear is even less on an issue because I’m not in a big ankle foot orthosis.
Are there things you wish you could do that you can’t do because you’re an amputee?
The only real inconveniences that I worry about are going somewhere tropical and sweating to the point of having an issue keeping my leg on. The other one is swimming. At the pool it’s not that big a deal but I’m not sure what I will do at the beach, you can’t really leave your prosthesis just sitting on the beach while you crawl in. Maybe I’ll have my husband carry me?
What has life been like since deciding to amputate?
It has had its ups and downs. I assumed since I was an elective amputee my residual limb would be an easy fit, but that hasn’t been the case. The end of my limb is very square and needs extra attention. I routinely have issues getting fully into the bottom of my socket, causing suction bruises at the end of my limb. I developed a really deep painful spot on the left outside of my fibula and we realized recently that my tibia and fibula compressed inward a bit, and now the screw used to fuse my bone bridge onto my tib/fib is protruding out of the bone a good centimeter. It’s causing incredible pain and so it needs to be surgically removed. It’s not all a walk in the park but when your socket fits, it’s magic.
Do you ever regret your decision to amputate? If so, when & why?
Never. I don’t even regret the accident, honestly. I was on a sucky life path before I had to jump from that window and now I feel like I am totally as I was meant to be.
What would you say to someone who is trying to decide between limb salvage and amputation?
This comes up a lot for me and I always find that if a person is even considering amputation, if it is even remotely a thought, then amputation is likely a good bet. Everyone is different, but for some, this is the right choice. There is such a misconception that amputation is a failure or a death sentence. With modern medicine, this is completely untrue.