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Does anyone know about nephroptosis and treatment after 2 failed surgeries? Kidney continues to fall after surgery.

By December 14, 2009 - 5:14am
 
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I have right nephroptosis, first surgery in 2003 worked great, but kidney fell again in 08, surgery again, kidney fell again 6 months later, now the doctors dont know what to do. Have right flank pain 24/7 and am on fentanyl patch. There don't seem to be any good options and it is difficult to find a urologist who has actually dealt with this condition.

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I went undiagnosed for 7 Years... with my life Crumbling around me. It was nothing short of a Miracle that I stumbled upon another message board listing my Exact Symptoms and the Surgeon who Performed the Surgery with Success! Less than a month later I was in the Austin TX Operating Room (900 miles away from home) and I'm now 4 months Post Op WITH MY LIFE BACK!!!

July 16, 2015 - 1:38pm
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Anonymous (reply to ac14)

Who was your dr? And hospital?

January 25, 2017 - 2:14pm
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Anonymous (reply to ac14)

I need to find out this hospital, my life is miserable

December 12, 2016 - 8:03pm
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Anonymous (reply to ac14)

Please tell me who your doctor in Austin is. I am suffering and the doctors in my city had never heard of this before and the pain meds don't touch it except for the strongest opiate and that sends me into hypoxia

JB

June 10, 2016 - 6:09am
EmpowHER Guest
Anonymous (reply to Anonymous)

Hey I'm going through the same thing. If you want to connect for support denaloveshugs@gmail.com
I hope to hear from you.

July 12, 2017 - 1:39pm
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Anonymous

Has anyone donated their Mobil kidney? I am in the process of doing that.

February 22, 2015 - 9:27pm
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Anonymous (reply to Anonymous)

I thought and spoke about it, but my doctor didn't want to do this.

February 23, 2015 - 12:47am
EmpowHER Guest
Anonymous

This condition is more common in slim people. Some weight gain can help but not always.
Unfortunatelly, not every urologyst or kidney specialist knows how to treat it...
I am orginally from Russia and nephroptosis is well known there...doctors are pretty good at diagnostic and treating this condition, however, many doctors in Nirth America don't know too much about this condition...i guess it is easier to ignore when you can't treat it. I find it a shame in north american health system but that is what it is.

I am going back to Russia this year to fix my problem there. Have been living with this condition for many years now and it doesn't get better.
Having a pelvic and back pain, weakness, my weight is lower than it should be...

February 20, 2014 - 3:19pm

My surgery is set for 10/24 my kidney apparently drops three inches when I stand and then folds over into my abdomen. It will be performed laparoscopic so hopefully not too much down time

October 2, 2012 - 10:07pm
EmpowHER Guest
Anonymous

Hello, I have a moving right kidney as well. It drops about 8 cm when I stand or sit.
There is an operantion on the way and my question is: what is the better option, open surgery of labaroscopic surgery? I know open surgery has longer recoverytime, but is the method better so the change that the kidney will hold to its position might be higher?
I hope anyone has some experience with this?
The docters say all differents things to me :/
Thanks a lot from Holland.

September 14, 2012 - 4:23am
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