For those of you that had surgery outside of the USA

 I went to Dr. Marchesini in Brazil, over six years ago. I talked to my PCP before going, and got his affirmation that he would do my follow-up care. It worked great for about a year, until he moved to another state. At that time, a nurse practitioner who worked in his office asked if she could take over my care, which worked well for another year, until the office transferred her to their quick-care office where I could no longer get guaranteed appointments with her. I've tried a couple other PCPs, but haven't found one that I really cared for, nor one that knows anything about the DS or been willing to really learn. I keep going back to the first office for my blood work, have copies sent to me which I send to Dr. Marchesini. Basically, I have taken care of myself for the past several years. I consider myself well-educated and highly knowledgeable, but I would greatly appreciate the care of a doctor whom I could trust again. It's not that I can't find anyone to take me, it's just that I can't find anyone I trust and have confidence in (and who I feel actually knows more than I do when it comes to the DS). Keep in mind though, I live in a fairly small city (40,000), so my options are highly limited. If you are from a bigger area, you'd probably have better luck. Also, even if I'd have had my DS here in Idaho, the one decent DS surgeon doesn't do much with follow-up care, so a local PCP would still be an issue.

Good luck! And if you're looking to go out of country, Dr. Marchesini is absolutely amazing!!!