This is a repeat post since I accidently put it in the wrong spot. I’m so sorry to hear about your daughter’s condition—it sounds incredibly difficult, and I can understand why you’re feeling concerned. Get a second opinion. Seeking another opinion from specialists, especially at a major medical center or academic hospital, could provide new insights. Some places, like the Mayo Clinic or Cleveland Clinic, have teams that focus on complex cases like hers. Even if surgery isn’t an option right now, it’s important to make sure her doctors are exploring every possible way to manage her condition without surgery. Keeping your daughter's blood pressure controlled and monitoring her closely are key. I get annual CT scans for my dissected aorta repaired with a graft in 2015. It gives me a lot of reassurance that things are stable. I know this is overwhelming, but do not be afraid to ask her care team tough questions or even look into clinical trials. Sometimes those can offer options that are not widely available. In addition, she is likely to qualify for permanent SS disability insurance so find a good SSDI lawyer in a major city near you and apply today. That would help from a financial perspective AND a health perspective if she's currently under a workload stress. Finally, don’t underestimate the importance of emotional support—both for her and for you. Talking with a counselor or connecting with support groups can make a big difference in getting through something this challenging. Peace.