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

Kurn95,

I bet it is difficult to find a urologist who has dealt with it, because it's not even easy to find a lot of information on the web about it, is it?

For others who are reading, nephroptosis (or "floating kidney") is a condition in which the kidney actually prolapses, or falls, lower in the body than it is supposed to be.

Kurn, are you male or female? And how old are you? If you are female, have you had other surgeries, like a hysterectomy?

And can you tell me a little more about your procedures? How was the kidney's position fixed? And why does your doctor believe it failed, either the first time or this time? Is it due to muscles or ligaments that have gone weak?

Here is a JAMA (Journal of the American Medical Association) archives article that you may be interested in. Only the first couple of paragraphs are available without purchase, but you may be able to tell from reading those whether it would be helpful to you:

http://jama.ama-assn.org/cgi/content/summary/XLI/19/1132

And here's another registration-needed study, in the Southern Medical Journal:

http://journals.lww.com/smajournalonline/Citation/1912/06000/Further_Con...

Let us know a little more in detail, Kurn, and we'll see what we can find out for you. In the meantime, maybe someone else who has had experience with this will see your question and share their knowledge.

originally started in 2003, severe right flank pain, lots of xrays all normal because the kidney goes back in place when you lie down. Finally did an x-ray upright, found my kidney fell into my pelvis and shifted midline. By the way, I am female, and fit the "body type" for nephroptosis. Anyway, did surgery, sutured the kidney, through the renal capsule to the back (psoas) muscle. Was great for 4 years, then pain again, upright x-ray showed it broke loose and fell again. Surgery again, this time only stayed in place for 6 months. Options now, surgery again, but the chance of success decreases with every surgery so they are not hopeful it will work this time and if not, then looking at nephrectomy which the dr nor myself want to do. Mainly I have O- blood, but I also have the Rh negative factor, that means, if my other kidney failed or something happened and I needed a kidney to get a match for me is about a 15 year waiting list because of the Rh factor. So right now I am stuck on pain meds everyday, also not a good option, but the drs feel it is the best option right now and will reevaluate in 6 mos. Yes, it is very hard to find a urologist who has dealt with this and when you do find on, they have only seen it a couple of times (once or twice), so no one is an expert on this. It is very rare, interestingly my grandfather has bilateral nephroptosis and lost one of his kidneys over it, it was blocked off and died. So there you have it, not something you would wish on your enemy. To control the pain I am currently on Fentanyl patches 75mcg and that controls it well enough to cope, but still have episodes of breakthrough pain and end up in the ER occassionally or have to take morphine on top of the fentanyl to manage past the pain when it gets so acute that the one med alone cant handle it. So just a really bad situation especially since it isnt well known and will probably never be since it is so rare. The first doctor that did the surgery had never done it and had to read his surgical textbook to figure out what to do =. That made me feel good, but it worked for 4 years.

oh, and no, never had hysterectomy. Apparently, the reason the kidney won't stay where it should is because I don't have any fat around my kidney, which is what normally keeps it in place.

Here's a link to a case report: http://www.ncbi.nlm.nih.gov/pubmed/19935816?itool=EntrezSystem2.PEntrez....
[doctor's personal contact information removed by Moderator]
Good luck!

consider having it removed (maybe donate it to transplant victim) but make sure your other kidney is healthy and stable. i just had a r nephropexy and found out my other kidney was in the ditches too and no one saw it.

I have had one failed surgery in 2009. My consultant is now holding a meeting to decide on what further treatment plan to pursue. He did mention referring me to pain clinic!!! But I made it clear that this is not the kind of pain I could 'learn to live with'. So, it seems to be another waiting game! Another doctor suggested I gain weight. I have come to the conclusion that if there are no other options, I would rather donate my kidney to someone who could gain better use out of it. Keep me posted on how your search for answers goes.
Good luck

Anyone have information about right-sided nephroptosis and pregnancy? I am thinking that because the pregnancy grows slowly, the kidney would be slowly moved, and could be "pushed" back into place, the way I can freely move it now (??). I am worried about the forceful pushing of labor more so than anything else, and wonder if a C-section would be safer (though risky because of the abnormal anatomy at baseline). I am not pregnant but may be within the next year. You all are correct, very hard to find information about this. It took me eight months of pain (although it was daily, it was brief/fleeting, so not disruptive, luckily!) before finding a doctor who quickly, easily made the diagnosis (yes, with the upright/lying down xrays, so EASY!) after so many had told me the pain was all in my head. Best of luck to the others out there with this odd condition!!