Recently Diagnosed with Nephroptosis (floating kidney). Anyone else?

@gigi82 nephroptosis is most often not consider a situation needing correction. I live in the Dallas area and could only find one kidney specialist willing to even consider doing surgery. I set thru appointment after appointment listening to doctors pontificate on it not being a problem needing correction. They were some of the most painful appointments I have ever had. It took me back to my teenage years when a doctor explained to me that menstrual cramps were all in my mind and that I way denying my role in as a childbearing member of society!

To get a floating kidney diagnosed you need to have an IVP imaging test run. An IVP is an intravenous pyelogram kidney test that is run while lying down on the table and while standing. A floating kidney returns to its proper location when lying down, thus most imaging will not show the problem.

To even be eligible for surgery should you find a doctor that does it, your kidney must drop a minimum of 5cm. Anything less than that does not qualify. Even the one Dallas doctor I found will not consider it if the drop is below 5cm. In the end I did not qualify. It is serious surgery and for now I am simply watchful waiting. Knowing the cause did provide some relief from the worry.

@jabrown0407 thank you so much for the detailed response! I am definitely having symptoms and I can physically feel it in my abdomen. My issue here in Canada is that nobody really even recognizes it or knows what it is. It is very frustrating because it’s been almost a year of doctors appointments with various specialist who say nothing is wrong with me and every time I’ve done a kidney ultrasound it’s always been laying down. I will request the test you mentioned hopefully that will give me some ammunition.

That's quite the opposite of what one sees with physicians......they're always ready to whip out the 'ole scalpel!! I would seek an opinion from a Nephrology Clinic and specialist at a large medical facility. ie Cleveland Clinic, Mayo etc. If you get the same response then leave it alone. Going through surgery is not a walk in the park and no sense in needless surgery if the standard for surgical procedure on floating kidney's is 5 cm. Even if greater than 5 cm and it's not a bother I still wouldn't submit to surgery unless it was an absolute. Do some research on NIH and some of the larger medical facilities and see what the recommendation and what the Best Practice and Criteria for caring for patients with you condition.

The doctor I saw in Dallas that would consider surgery is with UT Southwestern and he told me he does about one nephroptosis correction surgery a year. He is a urological surgeon who sits in a named chair at UTSW. He mainly does robotic and laparoscopic surgeries. The two doctors I saw that refuse to accept it as a medical problem that requires correction work for Baylor Scott and White. Both of these doctors are also urological surgeons.

Both medical networks are teaching hospitals. I also consult with a medical team at Cleveland Clinic and they are interested in following my encounters on the topic because none of them have ever had a patient with the problem and thus have no real-life experience. They did not even know that the kidney floats back to its home position when you lay down. It simply is a rare condition and many cases do not require treatment. The surgical solution is a very serious procedure and should not be considered unless compelling evidence supports the need for it. I doubt any doctor would do it with less than compelling evidence.

I have been told what symptoms to watch for and when to go directly to an emergency room vs. contacting my doctor during office hours.

I first had my floating kidney diagnosed 50 years ago. Then I gained some weight and only had minor pains. Fast forward 50 years and I had a hysterectomy. All of a sudden there was space again for my kidney to float and it did. I went to the urologist and told her the sequence, she ran an IVP to confirm. Then we went on a journey to find qualified help. For now I am content with where I landed.

I agree! Leave well enough alone! But what an interesting history! Keep well!

@jabrown0407 - Can I please get that Dr.'s contact info from you, too?

I'm a 53yo male who has been dealing with this for years now, have *ALL* of the classic nephroptosis symptoms, and can't find anyone in my state (or region) who can give me an IVP, Whitaker test, or even an upright CT to confirm a diagnosis.

Thank you - I'm desperate!