The twins enjoy family time, including lunch and shopping.
“PT had me bring in heels to work with and see what would be suitable for me, because they knew wearing my high heels made me happy,” she laughs. “We started out with chunky ones, walking with them on the parallel bars. en, when it was time for me to return to work in January of this year, I slowly graduated from platforms to nally getting into my real high heels, which I am so happy to be in. “I really would like to thank all the inpatient and outpatient occupational and physical therapists who worked with me when I was in the hospital,” she continues. “ey all really worked hard with me to make sure I was able to get to my high-heel goal. My next goal is to get back to playing soccer with my 40-plus women’s team, and I know I can do it. It was a long, hard road; a hard recovery. But I have to have a positive attitude about the whole thing. I can’t let it drag me down.” is ghting spirit that both twins share is what got them through what Dr. Uchiyama explains are extremely high-risk surgeries. “Both Michelle and Melissa had large, aggressive tumors invading their spinal canal,” he says. “ey had similar, yet dierent, procedures—Michelle had a laminectomy and fusion, Melissa had a laminoplasty as part of cervical tumor resection procedures. Although they are identical twins, their anatomy is a little dierent, so that was part of the decision-making process, to tailor treatment to the short-term problem while considering the long-term needs. Both surgeries were dangerous, and they came out with signicant impairments, even though we were meticulous, because the tumors were a part of their nerves.” Still, despite their complex surgeries and challenging recoveries, Dr. Uchiyama, like Dr. Barnett, marvels at the twins’ resilience in the face of such severe medical adversity. “You would never know by seeing them that their bodies are lled with tumors,” he says. “ey go about their daily lives and have a great sense of humor. Most people would have taken disability, but they are both chugging away. ey both had dicult recoveries, but can now walk without crutches or a walker, which represents a very dramatic recovery, considering the type of tumors they had. at comes from them being positive and staying focused on their rehab. ey’re really exceptional people, and we’ll continue to treat whatever issues come their way.”
Looking to the Future Only time will tell how the twins’ recovery will progress and how their tumors will grow, so Melissa and Michelle will continue to work with their team of doctors to monitor and treat this lifelong condition. Both are on pain-management regimens, including medications and injections. Michelle recently began a new medication (see sidebar) to try to slow or stop tumor growth, while Melissa opted to see how her sister responds to the medication rst. Both sisters are thankful to their Scripps team for the exceptional care they have received along their dicult journey. “I could not ask for better physicians and surgeons. ey all take such pride in and have so much dedication to their patients’ care,” Michelle says. “ere need to be more doctors like the ones at Scripps—doctors who care and show so much empathy. From the surgeons to the aer care to all the hard work I put into not wanting to have a caretaker for the rest of my life, if it were not for Scripps, I would not have gotten the care and treatment that I needed.” Melissa adds, “I have had such a strong relationship with Dr. Barnett over the past 22 years. She has always been there for me when it comes to my NF and has always been protective of me. Any time I have increased pain or if something is not right, she always jumps in so we can try to gure out what is going on. Additionally, I had radiation with Dr. Tripuraneni and surgery with Dr. Uchiyama, and they are both so caring and awesome. at’s my team!” But there is one more co-captain of Melissa’s team whom she absolutely could not live without—her twin, Michelle. “We’ve never done something like this together as twins. When we were young, we were always in twin contests,” she laughs. “Even though this disease has taken a big part of our lives, it’s been a great experience for us to go through it together. ere is hope, and we can do it. at’s just how we are. We’re ghters.”
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