I’m a healthy, high-functioning amputee. So why did I opt for experimental revision surgery?
By Angie Heuser
“You appear to be a good fit for an experimental revision procedure on your residual limb,” said the cheerful person on the phone. “We would like you to come to Boston for one more interview to check everything. Would you be interested in moving forward?”
I answered “Sure,” but I was thinking to myself: I must have a screw loose to consider going through another operation. I wasn’t committing to surgery yet, just a preliminary evaluation. But I’d been having enough pain in my residual limb that I was willing to consider anything that might offer relief. So, six years after my initial amputation, I flew from Phoenix to Boston.
After undergoing blood work, a CT scan, and an X-ray at Mass General, I walked into the office of Dr. Matthew Carty, the surgeon who would be operating on me. After we introduced ourselves, he started explaining what he had found in my labs and images. His first words were: “Believe it or not, we found a loose screw coming out of your femur.”
So I did have a screw loose! And that’s how I went from being unsure about the procedure to, “Let’s do it!”
WEIGHING PROS AND CONS
For most of us, losing a limb is traumatic enough to never want to deal with that again. Choosing to do it a second time required a huge mental step. I knew the dangers of going back in, including the chance that I could end up worse off than I was before. I already had a pretty high quality of life; why mess with a (mostly) good thing?
But after Dr. Carty showed me the loose screw—left over from a limb-salvage surgery that occurred years before my amputation—my perspective changed. That piece of stray hardware was probably behind the knife-like phantom pains I’d been enduring for years, so simply removing the foreign object would probably make the surgery worth all the trouble.
But that wasn’t the main point of the procedure. Dr. Carty wanted me to help him test a new type of agonist-antagonist myoneural (AMI) surgery. In recent years, AMI surgery has emerged as a potential game-changer for amputees, with benefits that include pain relief and more intuitive control over advanced prosthetics. In most cases so far, it has been performed as a primary limb-removal surgery, not a revision of a prior amputation. And for those who’ve undergone AMI as a revision, nearly all have been below-knee amputees. I would be one of the first above-knee patients to undergo AMI as a revision procedure.
Before I made a decision, I did what any amputee should do when considering a revision, reconstruction, or experimental surgery. I learned everything possible about what the procedure entailed, what risks were involved, and how it could benefit me and my future. I had many conversations with Dr. Carty and his partner in developing AMI surgery, MIT engineer Hugh Herr, a bilateral amputee who has pioneered many groundbreaking prosthetic technologies. The decision hinged on a few key factors.
First, this procedure would be considered experimental as an above-knee revision procedure. Therefore, they couldn’t guarantee any sort of outcome; there just wasn’t enough prior data to go on. This was a big question mark for me and my husband: Would it be worth the setback and time commitment?
In partial answer to that question, I learned that if the AMI was successful, the muscles in my residual limb would become stronger instead of atrophying. This was important to me as a middle-aged amputee, because as we grow older our muscle tissue begins to disappear. This process leaves less cushion to support the use of a prosthesis, increasing pain with every step.
Another potential benefit would be increased proprioception. For an above-knee patient, AMI stitches together the hamstrings with the quad muscles, creating the same flexion/extension system that would exist if I still had my knee. With the muscles reconnected, I would have a clearer sense of where my limb is in space without relying on sight, making it easier for me to confidently step out in my gait and giving me better balance and coordination.
Finally, a successful result would make me a front-running candidate to receive and efficiently use the advanced prosthesis currently being tested by Herr and his team at the MIT Media Lab. This knee uses bionic muscles to function like a natural knee, allowing the user to easily move up and down stairs and over obstacles. I loved the idea of helping to push the boundaries of science while supporting the entire limb-loss community. If going through the procedure would yield some of the data necessary to make AMI revision surgery a reliable option for other above-knee amputees, I was all in.
This all sounds so wonderful, doesn’t it? Who wouldn’t want to preserve their limb muscles, gain better balance and proprioception, and be on the cutting edge of scientific technology? Well, we haven’t talked about the risks yet. And every surgery has some of those. In my case, they included: not healing well; infection; continued (or even increased) pain; problems with getting a good socket fit for my new limb form; muscles not strengthening as planned; and potential complications during surgery. And even if everything went smoothly, recovery and rehab would require a lot of time and effort.
I could have allowed these risks to take over and hold me back, but that isn’t my true nature. Yes, I had reservations; it wasn’t a slam-dunk decision. But the screw dangling out of my femur tipped the scales. Dr. Carty told me that the knife-like phantom pains I had been feeling for the past six years were almost certainly caused by this screw and the bursa that had formed around it. If going through this surgery would give me relief from this debilitating pain, that was all I needed to know.
Dr. Carty said I didn’t have to make a decision immediately. I could take some time to think things over if I wasn’t sure. But I was in good shape, strong and healthy, making me more capable of quick healing. If I waited, I might encounter some other health issue that could diminish my chances of a successful outcome. And rehab and recovery would only become more difficult as I got older. My thinking was that tomorrow is never promised to us. The timing could not have been better. Once I decided to go for it, I wanted to get scheduled as soon as possible.
PREHABBING
After leaving Dr. Carty’s office, I had one month to prepare. So how do you prepare to go under the knife again? How do you handle the idea, knowing just how difficult the road ahead will be? Here’s how I got myself ready physically, emotionally, and mentally.
First, I made sure to stay in top physical form by walking, exercising, and eating right. I gave up alcohol, too. The stronger I felt going into this surgery, the better my chances of coming out of it in good condition. I couldn’t control every variable, but I wanted to make smart choices over the things I could control. I understood what it would take to get back up on my feet (or foot), so I tried to make the most of the opportunity to prepare.
I also spent time getting my home in order, my dogsitter lined up, and some food prepped and in the freezer for when I got home. It felt similar to the nesting I did when I was pregnant with my son. I wanted to come back to a clean, organized home that didn’t need to be tidied up, so I could just focus on healing.
I spent time every day with my horse, as I use her for therapy. My happy place is spending quiet time around her, centering myself, and resetting my nervous system. I can only get physically close to her when I empty my mind and let go of my fears. If I don’t, she wants nothing to do with me. Horses have a way of sensing our baggage, even if we don’t acknowledge it. When you bring anxiety into the arena, a horse will keep its distance. I needed her now more than ever, so I did my best to leave doubts and fears behind. Those hours galvanized my heart and mind for the procedure and bolstered my confidence in my decision. My commitment was total.
I arranged time with friends and my pastor. Talking things through with them allowed me to understand it better and help others understand what this procedure would do. I spoke of all the possible benefits repeatedly, which improved my train of thought. Your thinking affects your perspective, and I am a firm believer in manifesting your destiny by thinking positively.
Finally, I set concrete goals. I wrote down everything I wanted to be doing, with a timeline of when I wanted to achieve them—everything from getting to the gym on crutches to driving my car, getting off pain meds, and walking again in a socket. I knew I wanted to be independent as soon as possible, so making dinner, doing laundry, and getting back to hiking were all part of my list of goals. I also created a vision board with pictures, verses, quotes, and notes from family and friends to remind me of my “whys” and what drives me to be better every day. This vision board sits in my office, so I can remind myself of where I was and what I want to get back to.
THE WAY FORWARD
I had the revision surgery last June. By the time you read this, I’ll be more than six months into recovery. All in all, I remain sure that my decision to go through with this experimental procedure was the right thing to do. I am on a new path that has taught me more about myself and my life as an amputee. As a podcaster and moderator of an amputee women’s chat group, I was able to use this experience to reconnect with the experience of new amputees who are going through it for the first time, healing from their surgery, and struggling through the process of fitting, rehabbing, and regaining mobility. I have also gained more insight into the advancements in science and robotics. This has been an invaluable teaching moment for me. Through my AMI journey, I can better understand and relate to more people, speaking from a place of knowledge and firsthand experience.
Having the revision AMI procedure was by no means an easy decision, nor has it been an easy recovery. I am still dealing with fitting issues with my first socket post-surgery, which is one of the risks I accepted. But I know that I helped advance the science behind the procedure, which helps our amputee community. I also learned more about myself and how to handle a major setback with courage and grit. For this I am so eternally grateful. If given the chance again, I wouldn’t hesitate. I am stronger for it, and I am proud to keep doing my part to advance technology for future amputees.
