Max Conserva: Self-advocacy Fuels an Improved KAFO Design

[caption id="" align="alignright" width="284"] Photograph courtesy of Jeffrey P. Worthington.[/caption] Max Conserva, 35, can often be found working out or teaching a class for adaptive athletes at San Francisco CrossFit, his muscles well-defined under the strain of a 300-pound squat or a 150-pound deadlift. Alternatively, he might be working with mechanical engineering students at Stanford University who are designing an improved KAFO for him, or he might be presenting his case to yet another team of orthotists in an attempt to challenge them to expand their creative thinking. Or maybe he's in his home workshop—really a workbench in the hallway—designing, bending metal, sewing straps, or welding. Conserva's Mad Max: Fury Road -like leg brace is not the first thing you notice about him, but it is a well-built piece of equipment that is put through its paces in his daily life. In addition to CrossFit, he road bikes, snowboards, runs, and plays tennis and is an adaptive athletics advocate. The KAFO is a custom design fueled by Conserva's persistence, focused attention, and clinical investigation, as well as the knowledge he gains from becoming an expert in his own, unique medical presentation. No Textbook Solution Conserva's right leg is mangled. In 1989, at the age of eight, he was crossing the street when he was run over by a semi-truck. He had eight surgeries during the first seven years after the accident, and he has worn a KAFO of "one form or another" ever since, he says. Sounding like a medical professional, Conserva rattles off his extensive list of injuries: "The lateral femoral condyle and lateral tibial plateau are largely absent; the medial femoral condyle and tibial plateau are significantly deformed (hypertrophic spurring); the femoral trochlea is absent; there is a bow in the distal femur resulting from surgical realignment; and the patella is subluxed laterally. I have osteopenia and moderate-to-severe osteoarthritis of the knee joint; the medial compartment of the knee joint is narrowed; the lateral compartment is absent; I have ankle deformity, supination, and inversion and varus hind foot." The list of muscular and tissue impairments and functional deficits is even longer. Conserva says that after the accident he was able to resume "regular kid activities." However, sometime between the second set of surgeries he underwent in the 1990s-about five or so more-including being the second person in the United States to undergo an Ilizarov procedure, he says his leg continued deforming and became less functional. He withdrew from many physical activities. "As valgus increased, it decreased the overall stability of my knee and my ability to flex and extend my leg," he says. Yet, while in high school, Conserva played tennis and took up snowboarding. "Mostly for the positive, my leg kind of adapted as best it could and overgrew some parts and twisted a lot of things so that I could actually function," he says. "[B]ut the end result was obviously a very complicated orthopedic and orthotic problem. All of these things compounded into a really weird gait." Given Conserva's one-of-a-kind injury, with no textbook solution, he was told by surgeons and orthotists that the function he had was as good as it was going to get-and he accepted that prognosis for many years. Moreover, sometime between high school and college, he stopped trying new activities, he says. He had given up bike riding long ago, he wouldn't go to the beach or swim, and he couldn't work out at a gym or run, he says. [caption id="" align="alignright" width="307"] The ankle harness (top right) and hip rotation accommodation device (bottom right). Photographs courtesy of Instagram@goodlegproject.[/caption] [caption id="" align="alignnone" width="350"] Close-up photographs of the knee extension device, courtesy of Jeffrey P. Worthington.[/caption] "I became more self-conscious about my leg. I noticed how crooked it was and skinny," Conserva says. "I was kind of settling into the idea that I have a disability." This attitude characterized his 20s, he says, and the inactivity was reinforced after he found a job that required him to sit in front of a computer all day. Eventually, with his 30th birthday looming, Conserva says he took stock of his life. He quit his job so he could travel, and focused on getting his neglected personal life and his health in order. He also revisited his condition. Bridging the Gap Conserva talked to all the orthopedic surgeons and orthotists he could find. He learned about all the surgery tracks and procedures for his condition-and realized his best approach was to seek an improved orthotic solution. He returned to physical therapy and got involved in CrossFit, the latter of which further emphasized the need for a better KAFO. He also decided that, rather than expecting others to champion his case, he needed to research and learn about his medical condition and become his own advocate, which included starting a website in 2014, www.goodleg.org . The website chronicles his condition and his orthotic journey, including x-rays and medical records dating back to 1989, and encourages input from others. "For about three years now, I've invested everything I can to become an expert-not an expert orthotist or expert physical therapist, or being a surgeon-but to become an expert at the intersection where those professions and my conditions meet, so when I work with those people, I can be the bridge between applying their amazing knowledge to my condition as fast and effectively as possible," he says. Conserva began his journey to an improved KAFO by writing an outline of what he thought he wanted, and spent hours scrutinizing the brace he was wearing at that time. He engaged orthotists at the University of California, San Francisco (UCSF), and reached out to mechanical engineering students at Stanford. "I came into that first appointment [at UCSF] with a piece of paper, and I wrote down [that] I think my knee joint isn't high enough for these reasons. I think that my foot is turned out externally so much that it feels uncomfortable when I bend down and pick something up for these reasons," he says. By starting the conversation, Conserva got the wheels of progress turning on an improved KAFO—the first iteration of which he received in January 2014. To make subsequent appointments more productive and focused on design improvement, he learned how to make his own repairs—including sewing straps, replacing rivets, heating up plastic and flaring it out, adding foam, and welding. [caption id="" align="alignright" width="321"] Conserva posts notes and drawings on his website to encourage input from others. Photograph courtesy of Instagram@goodlegproject.[/caption] In between appointments, he began plying the UCSF orthotists with e-mails and providing them with before-and-after videos of subsequent modifications to the KAFO so they could see the results to his gait and athletic pursuits. He took the process even further by "hacking up" his old braces and building mockups of what he thought he wanted. Then he took it to the next level and started making things he could wear. "Even if it was an unorthodox idea to what they [the orthotists] learned, they could take it to the next level. They could make it clean, perfect, robust to last a long time...," he explains. "It isn't me attempting to be an orthotist," Conserva emphasizes; he is trying to help his orthotist-Richard Nguyen, CPO, manager of the Orthotics and Prosthetics Center at Mission Bay, Department of Orthopedic Surgery, UCSF-help him. The two have been working together since the end of 2014 and are constantly talking and exchanging ideas. "I could not have asked for a better orthotist," he says. "It all started with me putting myself out there and making myself easy to work with." Today's KAFO Conserva's KAFO is a work in progress. It is modular, so the various portions can be refabricated or changed out to test different designs. So far, the thigh portion has been swapped out three times, and the AFO portion has been swapped out probably nine times, he says, and what he calls a "hip rotation accommodation" device has been added. "Now, the brace I have, the only thing that is actually the same as the one I walked out with in 2014 are the uprights," he says. Ankle Harness The ankle harness was designed by Conserva and Nguyen. It uses a Click Medical L4 Dial so Conserva can switch between active and comfort modes. "In active mode, it keeps my foot in a more functional position, pronated," he explains, while comfort mode allows his foot to assume a more relaxed position. "The main struggle is around applying enough force to the lateral/anterior sides of the foot without smashing the peroneal nerves that run along the top." Nguyen also replaced the carbon leaf spring with a Becker Double Action Joint, which is performing much better than expected, Conserva notes. [caption id="" align="alignright" width="403"] Photograph courtesy of Kimo Easterwood.[/caption] Knee Extension Device The knee extension device was a collaborative effort between Conserva and the mechanical engineering students at Stanford, he says. The current prototype consists of a metal cam attached to the Becker knee joint on his KAFO and uses an elastic band that runs along the outside of his leg, from just below his knee to his thigh. The main portion of the device consists of two guiding plates with three dowel pins attached to dual bearings. The guiding plates track and protect the elastic, and the bearings allow the elastic to roll smoothly across the cam without binding, he says. "In essence, as I bend [my knee], the elastic is stretched, which stores potential energy, and the energy is released when I extend my knee, giving my damaged knee and quadriceps the strength they need to fully extend." Hip Rotation Accommodation Device Hip rotation accommodation is a general term Conserva uses to describe the combined improvements to the thigh section of the brace-improvements that he and Nguyen developed and refined together. The standard Velcro® strap that enclosed the thigh shell was replaced with a Click Medical ClickFit Dynamic Strap. "The Boa closure is lower profile, lighter weight, and allows adjustability on the fly," he says. A second Boa closure is placed on a hip rotation strap that is worn underneath clothing. The strap hooks to the distal/ medial portion of the thigh shell, wraps around his hip, and connects at the waist. "This helps to control and accommodate the rotation that my abnormal leg experiences when flexing," he says. Achieving Extraordinary Results Conserva has invested hundreds of hours to achieve improved results with his KAFO. "If I want an extraordinary result, I have to be an extraordinary patient and meet extraordinary people to help me," he says. There are not hundreds of thousands of people demanding these types of KAFO improvements, Conserva admits, but perhaps taken individually someone might find some benefit, and commercialization of something he and his collaborators designed would of course be "phenomenal." More so, there might be people like him-meaning, "with an intractable condition, who have had all the surgeries, done all the physical therapy, and have the devices they are supposed to have"-who have no clear path forward, he says. For those people, he wants to show them what the process looks like to raise their satisfaction with their own health outcomes. "It's an everyday process," he says. "Nothing was immediate."

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