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

I have the same problem and can’t find a surgeon to fix it. Any suggestions?

@jabrown0407

Hello, I am responding to your post regarding the Nephroptosis.

I have a very long story involving 6 long years of increasing pain and odd symptoms which presented initially in 2017 and wasn't officially confirmed diagnosis until August of 2022.

I have had the surgical procedure done for lapi nephropexy.
The entire experience with this condition has been exhausting and unbelievably painful for myself.
It has caused soany other odd issues throughout my body, including hormone imbalances and now kidney stones every month since the procedure. Horrible.

I do not know how this clinic forum works but I am here and happy to help anyone out there figure out what to do and what is happening.

Please tag me or respond and let me know how I can provide answers or insight.

@heidihii

I have the surgeon!

Jefferson Health Network, Pennsylvania

Dr. Lallas is my treating surgeon and he is incredible

@helpless

Please see my reply down the thread! Tag me to ask any questions or get some direction for help

Hello! I was diagnosed just over a year ago with nephroptosis, but i was pregnant with my second when diagnosed. At almost 3 months postpartum, i was laying down and noticed that it was back..but now its bilateral. Both my kidneys just sit in my abdomen unless i am rolling or turning. I have seen/talked to 10+ doctors and none of them have seen it before. I have a phone appointment with Mayo this morning..

@cocorich - if you are interested I know of a doctor at University of Texas Southwestern (UTSW) a medical teaching hospital in Dallas, TX who does do the surgery if he decides it is appropriate. Every other kidney surgeon I saw in the Dallas area does not consider it a medical problem that needs addressing. What the doctor at UTSW decides to do is based on your individual case. Please let me know if you are interested in talking with him? I can share his name, he told me he does about one surgery per year - it is rare, but you still need help if it is happening to you.

That would be great! This is such a bizarre condition & it doesn’t help that hardly anyone has seen it!

@cocorich - I sent you a Private Message - keep me posted please.

I would love to know the process you went through to get a diagnosis. I am in Canada and doctors are not acknowledging the possibility of a floating kidney. I literally feel like a ball is moving around my abdomen when I go from laying to standing or laying on my side. Pulling sensation, nausea, inability to get a full breath in . All tests including CT, MRI etc show nothing. Would love to know who diagnosed you. I am happy to travel to the US.

@heidihii how did you get diagnosed? I am struggling to get a diagnosis here in Canada. They seem to think it’s not a condition. I am 99% certain I have this.