Sorry long post, need info please. Hello @cmael, where did you have your parathyroid surgery? Was it at Mayo Rochester? Your user name looks familiar to me from the transplant group. I had a kidney transplant and bilateral nephrectomy at Mayo Rochester 12/2020. I have had high PTH and high blood calcium for many years (10?) and they had attributed it to secondary to kidney failure due to PKD. My levels did not go down, and put on very expensive Cinacalcet. Levels went down for a bit, but back up after I was taken off. At that time I suggested having surgery rather than pay $100/mo co-pay for Cinacalcet which only masks the problem. I had a nuclear PTH scan at Mayo last November and they could see adenomas on likely at least three of my parathyroids or at minimum both sides. I don’t have osteoporosis-bone density is normal. Tentative surgery for May/June at Mayo. I had read and watched video from Norman Center years ago. I know they are experts at minimally invasive and checking all four. I would like to know anyone’s experience at Mayo for this surgery. Thank you for your input. @katya12 I see you are being treated at UIHC. What is your status now? My family and I have a lot of history there. I live in Cedar Rapids. I am curious to know how you are doing and if they are treating your PTH.
My main question is whether Mayo is as good as Norman? I had a video visit with Dr Daniel Hurley endocrinologist at Mayo who is very nice, and surgery would be scheduled with a surgeon who specializes in this for minimally invasive, but he appeared to be saying the incision would be larger than I remembered from Norman’s video. I would have an ultrasound and tests one day then surgery the next day at Mayo Rochester. Thanks for your help!