A few weeks ago I wrote about a friend with osteogenesis imperfecta — or brittle bone disease — who went to the ER after breaking her arm at work. She’s had hundreds of fractures over the years, and this latest was a bone that had been broken and repaired surgically several years ago. She knows the complications of OI separate her from the average Joe who shows up in the ER with a broken arm, but she was shocked when the orthopedic surgeon on call refused to see her. Instead, she was sent home with an untreated fracture and a prescription for pain medication. She lived in limbo for seven weeks.
Here’s the update on her medical saga: She spent the first few weeks dealing with insurance companies and piles of paperwork trying to get permission to consult with the out-of-network surgeon who had operated on her arm before. An appointment was scheduled, but she was turned away by office staff because the wrong forms had been filed.
She spent another week — still with a painful, broken arm — arranging for the correct paperwork and consulting the Osteogenesis Imperfecta Foundation about new surgical techniques that might be used to repair her arm. In a phone conversation before he’d even seen her, her local surgeon had expressed doubt that her bone could be repaired. But she refused to accept his pessimism, and instead found out about a successful technique developed at Johns Hopkins that includes wrapping cadaver bone around the OI fracture.
So, she put her surgeon in touch with the Johns Hopkins surgeon and he agreed to try the technique. Her surgery was two weeks ago, and she has at least another month before she knows whether the cadaver bone, a plate and some surgical wiring will give her a functional arm again. She and her surgeon remain hopeful.
If there’s a moral to this story it’s this: assume that your disability — no matter what it is — will freak out medical professionals, particularly those who staff ERs. Be your own best advocate. Do the research and educate them on what you need and what the research says. We all deserve so much more than a pat on the head and a script for pain meds.