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Old 03-18-2012, 08:00 PM   #1
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dntlgenie HB User
Lightbulb Nephroptosis diagnosis

Hello All,
I have been dealing with right side pain since December 2010. Have seen many doctors and had many tests, even my gallbladder out. Still pain. I think I have finally found out that it is neproptosis or floating kidney. Had an IVP done friday and my right kidney drops 2 1/2 vertebrae and lays on it's side in my pelvis when I go from laying down to standing. Is there anyone who has been through this or who has right sided pain when sitting or standing and is relieved when laying down. I have an appointment with a urologist at a medical school in my state. The local urologist has not even seen this problem before and still can't believe it is causing me pain. Would love to find other people who are going through the same thing I am.

 
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Old 03-21-2012, 05:18 AM   #2
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tuck HB User
Re: Nephroptosis diagnosis

no i haven't been through this....you should consult some Kidney specialist..

 
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Old 09-04-2012, 10:44 AM   #3
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Re: Nephroptosis diagnosis

I finally asked for a standing IVP in July after suffering for months. Even though the test confirmed Nephroptosis (showed my right kidney drops 2 1/2 to 3 vertebra), I haven't been able to find anyone familiar enough with it to help me figure out if it's definitely the cause of my symptoms (including gross hematuria since 2010) and excruciating pain at times. Keep searching until you find someone who can give you the answers you need. I'm trying another specialist tomorrow, so I'll keep my fingers crossed for us both!

 
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Old 09-04-2012, 11:21 AM   #4
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Re: Nephroptosis diagnosis

PearlieGirl07...sorry you are having to go through all this. My ride has been crazy with this problem, but I finally found someone locally who is going to do my surgery. I had been to the major medical school in my state, University of Alabama in Birmingham, and saw a urologist there who wouldn't even acknowlege that nephroptosis could be causing my pain. They did a renal scan there-which was of course normal since they had me laying down-and I asked him shouldn't I have had the test upright since that is what causes my pain. He said I guess I should have thought of that and I would have to have the test again upright. He said at least we have a control result to compare the next one to! This was a practicing urologist and a professor at the school there. I don't even think he looked at all of the medical records that I sent prior to my appointment. Needless to say, I did not see him again. I then went to the University of Florida urology department to see a doctor there. I was assured prior to my appt that this doctor knew of this condition and could help. No such luck. He did do another renal scan half laying down, half sitting up. But it did not show any blockage-although sitting up my right kidney function decreases. He did at least admit that I had neproptosis, but like every other doctor he could not believe that was causing my pain. He wanted to send me to the Spine clinic there to find out if my pain was coming from my back. I know where my pain derives from! Didn't see him again. Finally a nurse friend in town told me of a urologist here that was really good and cutting edge in surgery. I saw him, and he said that if he was the first doctor I saw he would have probably said the same thing as them, but after looking over my records and talking with me he will do the nephropexy. He has told me I could have it done and may still have the pain. I told him that I understood and I was willing to take that risk. He has never done the surgery before, but said it would be almost impossible to find a doctor who has. I told him I already knew that. I have a lot of faith in him just for believing in me. My surgery isn't until November due to scheduling conflicts, but at least there is a light at the end of a very long tunnel.
Sorry this is so long, but I feel your pain...literally! I do know there is someone out there that had a doctor at Duke do her surgery. I will be praying for you to find that doctor who understands. Keep me posted!
And if you have any questions or just want to whine a little bit, I'll be here. Kim

 
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Old 09-14-2012, 07:52 AM   #5
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Re: Nephroptosis diagnosis

Hi Kim!

I live in Charlotte, NC and actually had my IVP done at Duke in July since Duke was ranked in the Top 10 in the US for their Kidney and Urology departments. After seeing a post on another message board from someone who was diagnosed with Nephroptosis there, I was excited when the Radiologist told me she had never seen Nephroptosis until earlier this year and that woman was also a patient of Dr. Ferrandino (the Surgeon that another Duke Urologist was referring me to).
Thought that was a good sign...

I returned to Duke on August 1 for surgery to remove a large symptomatic upper pole LEFT renal cyst, and right before my surgery, I read an update on that other message board from that same woman saying that her Nephropexy had failed and the Doctor wouldn't return her calls and I thought "Oh, great...NOT such a good sign!".

I went ahead with the other surgery and two weeks later at my follow-up appointment I told the nurse and the Doctor that I was continuing to have right side symptoms and blood in my urine and left a specimen for test and culture.
Considering I "must've bled out somewhere" immediately after my surgery and needed a blood transfusion in recovery, I don't know why I even tried to discuss my right side with him.

I guess I was just disappointed that removing the baseball-size cyst didn't make me feel that much better than I did before and I DESPERATELY wanted to feel better. He just said the surgery was a success and told me to come back in 3 months for an ultrasound on my left kidney.

I guess the shock and disappointment wore off when I was on the way back home, because that's when it hit me that he didn't even examine me or check my sutures! When I called back the following week to ask about the results of my urine test/culture, a nurse told me that it was never ordered (even though I told the Doctor (and nurse) about the pain and blood in my urine and that the nurse already labeled the specimen) and said she didn't see the results of my blood panel either. Um, maybe because no one mentioned anything about it to me and they didn't draw any blood while I was there? Needless to say, I don't EVER plan on going back there again...

I completely understand how frustrated you've been and I think I FINALLY found a Doctor Charlotte who is not only familiar with Nephroptosis but he also has significant experience with the Nephropexy as well. I begged (and unfortunately, also cried a little) and am being worked in to see him this morning. I also completely understand your desperation to feel better, but I would really be cautious to have a Nephropexy performed by someone who hasn't successfully performed it before. I can certainly understand your desperation, but it might be worth having someone with experience perform the procedure since it might reduce the potential for failure.

Hang in there...XO!

Last edited by moderator2; 09-14-2012 at 08:34 AM. Reason: please do not post your email address

 
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Old 03-09-2013, 08:02 PM   #6
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Re: Nephroptosis diagnosis

how is your post op pain?

i had a nephropexy in june and started having symptoms (abdominal/flank/back pain) again in october. its all related to standing/walking for prolonged periods (not that long though!) as symptomatic floating kidneys usually are.

 
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Old 04-04-2013, 06:52 PM   #7
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Preciousbubs HB User
Re: Nephroptosis diagnosis

Hi, I had a floating kidney when I was eighteen. Like you I was having a lot of painand at first the doctors didn't know what was causing the pain. I saw a gynecologist because I was also having a lot of problems with my periods and they thought that could be cause. The gynecologist suggested that I should see a urologist. The urologist sent me for an IVP and the results came back that I had a floating kidney and it had dropped way down. Surgery was scheduled within a few weeks. When they opened me up the kidney was all curled and he had to actually straighten it out before he could suture it to the abdominal wall. At my follow-up appointment he told me that if they had left surgery for another fews I would have probably lost that kidney as it was in bad shape and wasn't getting the blood supply it needed. That was many years ago and that kidney is fine and the pain never came back. Hope your problem has been solved. By the way I live in Canada.

 
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