From there, Melissa told her sister, who had been struggling with chronic pain and unanswered questions for years, to conrm the diagnosis with her doctor as well. “Once Melissa was diagnosed, she told me, ‘Go to your primary care doctor and tell them your identical twin was just diagnosed with NF and you need an MRI,’” Michelle says. “Finally, I got the diagnosis. I changed my insurance so I could be seen by Melissa’s doctor, and we could be monitored together.” at doctor turned out to be Faith Barnett, MD, a Scripps Clinic neurosurgeon, who has now cared for the twins for more than two decades. Forces of Nature
“Although I was not the doctor that diagnosed them, I have known Melissa and Michelle since they were in their 20s,” Dr. Barnett says. “ey were in chronic pain for years, and people looked at these 4-foot- 10 dynamos and would never think anything was wrong with them. But nally, they had scans that showed thousands of tumors on their nerves—like clusters of grapes over all the nerves throughout their bodies. It’s a very painful condition, but they are forces of nature!”
Over the past 22 years since they’ve been in Dr. Barnett’s care, Melissa and Michelle have undergone radiotherapy, targeted radiation therapy to shrink the tumors, and have had countless surgeries at Scripps. Dr. Barnett continues to monitor the size of their tu- mors annually—and will do so for the rest of their lives.
One of Melissa's goals after her last surgery was to wear her high heels again.
Worsening Symptoms “My symptoms started aer I had my rst daughter. at’s when I started having chronic lower back and abdominal pain,” Michelle says. “Doctors could not determine the cause. I had a colonoscopy and countless tests, and I was told there was nothing wrong. When I got pregnant with my son—my second pregnancy—I was in pain from day one. e bigger he got, the more pain I was in.” Michelle and Melissa’s diagnosis nally came from an unlikely source: Melissa’s future mother-in-law, a retired pediatrician. “I underwent laparoscopic surgery because doctors thought I had endometriosis,” Melissa explains. “All they found, though, were white cotton-ball-type growths in my abdomen. My now-mother-in-law asked me if I had café au lait spots on my skin. When I said I did, she told me I had to go to my doctor and ask if I had NF. He looked at me and asked, ‘What’s that?’ Because it’s a pediatric condition, it’s very rare to be diagnosed as an adult. But it was conrmed that I had NF.”
“It takes a lot of psychological strength, and despite their constant pain, Melissa and Michelle both live veryll lives.” — F A I TH BARNE T T , MD , S CR I P P S C L I N I C
16 SAN DIEGO HEALTH | FALL 2021
Made with FlippingBook Ebook Creator