I did your echo recently. I met a patient today that I thought might be a great resource for you. Her name is Tammy, she is a paramedic, and she had a NUSS bar procedure at the Mayo Clinic 6 months ago. Unfortunately, she did not have a good experience, but she is aware of an alternative option at UCH. She recommends Dr. Maguid, who sees patients out of our cancer center. He apparently does a different type of surgical repair for pectus.
I think it would be helpful to hear about her first hand experience before you make a decision to move forward with the Mayo.
Anyway, I hope you don't mind, but I asked Tammy if she would allow me to give her number out to a patient I met recently (you). I encourage you to talk to her. (phone number)
I felt so humbled and grateful that she thought of me. And I did call Tami, and had a half hour conversation with her. I'm also deeply grateful to her for her time. She had a terrible experience with Dr. J.
She is 50 years old, and she hasn't improved pain-wise and hasn't been able to go back to work (she's a paramedic) for eight weeks. She said, "They won't take any accountability; they just keep telling me to go back to my PCP." "I can't get off the pain meds; I'm miserable." "I'm not the kind of person who needs or wants pain meds." She said her pain comes from the fact that "her ribs are cracked, and they didn't even acknowledge that."
She told me her Haller was actually only around 3.0, barely at the 3.25 needed for most insurances. I asked how she got the surgery approved, and she said "They must have fudged a bit." There's nothing weird about that. (If there's a patient who needs a procedure, and the physician agrees and the patient is suffering or the procedure is diagnostic to help the patient in the long run, I will happily find what is needed to get the procedure covered.)
She encouraged me to see Dr. Meguid at CU. He works out of the cancer center, and he does a lot of general thoracic surgeries, emphasis, it appears, on cancer surgery. She says, "He says the Nuss in adults is torture; it should never be done."
I thanked her for her time. I really am grateful for it.
She's a paramedic. I imagine that the medical/nursing world is something like what 14th century guilds in Europe were like. There's a subset of this among nurses, and also a strong odd bond among people who work in critical care (which actually includes MDs, paramedics, ER techs and cath lab people). You give your trust more easily to medical people. You're part of the guild, the club. So even though I've never met her, I'm inclined to trust that not only does she believe what she says, but also trust that she means to advise me well.
She told me that there was a webpage about her story, and I found it (use the button below).
So I have been ruminating on it these past few days.