PearlieGirl07...sorry you are having to go through all this. My ride has been crazy with this problem, but I finally found someone locally who is going to do my surgery.
I had been to the major medical school in my state, University of Alabama in Birmingham, and saw a urologist there who wouldn't even acknowlege that nephroptosis could be causing my pain. They did a renal scan there-which was of course normal since they had me laying down-and I asked him shouldn't I have had the test upright since that is what causes my pain. He said I guess I should have thought of that and I would have to have the test again upright. He said at least we have a control result to compare the next one to! This was a practicing urologist and a professor at the school there. I don't even think he looked at all of the medical records that I sent prior to my appointment. Needless to say, I did not see him again. I then went to the University of Florida urology department to see a doctor there. I was assured prior to my appt that this doctor knew of this condition and could help. No such luck. He did do another renal scan half laying down, half sitting up. But it did not show any blockage-although sitting up my right kidney function decreases. He did at least admit that I had neproptosis, but like every other doctor he could not believe that was causing my pain. He wanted to send me to the Spine clinic there to find out if my pain was coming from my back. I know where my pain derives from! Didn't see him again. Finally a nurse friend in town told me of a urologist here that was really good and cutting edge in surgery. I saw him, and he said that if he was the first doctor I saw he would have probably said the same thing as them, but after looking over my records and talking with me he will do the nephropexy. He has told me I could have it done and may still have the pain. I told him that I understood and I was willing to take that risk. He has never done the surgery before, but said it would be almost impossible to find a doctor who has. I told him I already knew that. I have a lot of faith in him just for believing in me. My surgery isn't until November due to scheduling conflicts, but at least there is a light at the end of a very long tunnel.
Sorry this is so long, but I feel your pain...literally! I do know there is someone out there that had a doctor at Duke do her surgery. I will be praying for you to find that doctor who understands. Keep me posted!
And if you have any questions or just want to whine a little bit, I'll be here. Kim