@jenniferhunter
Thank you so much, all of this truly means a lot to read — especially from someone who really understands how frustrating and defeating it can feel to be dismissed over and over while your symptoms keep getting worse. Your story will stick with me, especially how you connected the dots yourself, found the literature, and didn’t give up even after being turned away multiple times. The way you described losing — and then getting back — your ability to hold your arms up and move with coordination honestly gave me a lot of hope. Hearing that you were able to face the fear of surgery and come out better on the other side is incredibly encouraging. Mayo is absolutely my top choice, especially after being put through the wringer with three different neurosurgeons and getting mixed or minimizing opinions. I truly believe a multidisciplinary approach would make a huge difference and help avoid even more frustration. Unfortunately, after going back and forth with both Mayo and my insurance, it does look like my plan is out of network. As much as I wish I could just make it work, the upfront deductible and out-of-network costs just aren’t something my family can afford right now, which has been really hard to accept. Even so, your advice has been incredibly helpful and validating. It’s reinforced how important it is to keep advocating for myself and to find providers who actually understand complex issues like TOS and how old injuries can evolve over time. Thank you again for your kindness and for sharing your journey. It really means more than you probably realize.