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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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EmpowHER Guest
Anonymous

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!!

October 15, 2010 - 11:32pm
EmpowHER Guest
Anonymous (reply to Anonymous)

I'm currently 10 weeks pregnant and scared as I have a right floating kidney , have been referred to see a specialist but that's two weeks time what is going to happen?

October 26, 2010 - 7:26am
(reply to Anonymous)

Can you be more specific with your question? Are you asking "what is going to happen" in the two weeks between now and your medical appointment? Are you worried about "what will happen" during pregnancy, labor or delivery?

October 26, 2010 - 8:27am
EmpowHER Guest
Anonymous

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

March 9, 2010 - 2:37pm
EmpowHER Guest
Anonymous

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.

December 23, 2009 - 5:59pm
EmpowHER Guest
Anonymous (reply to Anonymous)

I thought about that and asked the doctor, but they said no because it is considered a diseased kidney, therefore, I cannot donate it. Bottom line, I may eventually have to have a nephropexy, but I am trying not to since I have Rh- blood and O- that blood type of kidney due to the Rh factor rarely comes along if my other kidney went bad, apparently my kidney type is the longest on the waiting list, about 15 years. So, because of that I am really trying to hang on to it. Thank you for your post and I am so sorry they missed your other kidney being bad. I have been a urology nurse (RN) for 15 years, that should not have been missed!!!!!! They are to always make sure the other kidney is ok before removing one. Sounds like malpractice to me and I am not a proponet of malpractice except in the right cases. If you want tell me more about your situation and I can give you my opinion.

December 25, 2009 - 8:04am

Here's a link to a case report: http://www.ncbi.nlm.nih.gov/pubmed/19935816?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=2
[doctor's personal contact information removed by Moderator]
Good luck!

December 15, 2009 - 3:58pm

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.

December 15, 2009 - 9:46am
(reply to kurn95)

One additional resource you may want to try is the American Urological Association (AUA) (click on orange hyperlink for their website), to see if there are any other Urologists in your area, specializing in this type of condition, or if there are any further studies or literature that you and your current doctor can be reading.

Let us know if this helps!

December 15, 2009 - 2:27pm

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.

December 15, 2009 - 9:45am
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