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

Posted by jabrown0407 @jabrown0407, Mar 4, 2023

I was recently diagnosed with Nephroptosis, aka Floating Kidney, and wondering if anyone else out there in MayoConnect land has been on this journey? I would like to connect.

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

helpless | @helpless | Jun 22, 2023
In reply to @heidihii "Hi there! I was diagnosed around a year and a half ago, and due to quite..." + (show)
@heidihii

Hi there!
I was diagnosed around a year and a half ago, and due to quite painful symptoms, it affecting my availability to work, having to lie down multiple times a shift in public, embarrassing omg, I've had the surgery last week to fix it! I am in quite a bit of discomfort currently on day 6, but it has eased off swelling slightly past few days. I was just wondering if your mum could remember what recovery looked like for her, how long etc. They didn't give me any info at the hospital and I can't find many accounts online. Well done to ur mum and u 🙂 it's a weird ride to go on hahah

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

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2 replies
sdarr | @sdarr | Jun 26, 2023

@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.

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sdarr | @sdarr | Jun 26, 2023
In reply to @helpless "I have the same problem and can’t find a surgeon to fix it. Any suggestions?" + (show)
@helpless

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

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@heidihii

I have the surgeon!

Jefferson Health Network, Pennsylvania

Dr. Lallas is my treating surgeon and he is incredible

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sdarr | @sdarr | Jun 26, 2023
In reply to @helpless "I have the same problem and can’t find a surgeon to fix it. Any suggestions?" + (show)
@helpless

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

Jump to this post

@helpless

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

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cocorich | @cocorich | Dec 18, 2023

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..

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1 reply
jabrown0407 | @jabrown0407 | Dec 18, 2023
In reply to @cocorich "Hello! I was diagnosed just over a year ago with nephroptosis, but i was pregnant with..." + (show)
@cocorich

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..

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@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.

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1 reply
cocorich | @cocorich | Dec 18, 2023
In reply to @jabrown0407 "@cocorich - if you are interested I know of a doctor at University of Texas Southwestern..." + (show)
@jabrown0407

@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.

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

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jabrown0407 | @jabrown0407 | Dec 18, 2023

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

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