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.
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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 - 9:45amThis Comment
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