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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 just had an open surgery in december 2011- and I hope the kideny will stay in place :-O! My main problems have been weakness, postural high pulse and hypertension (really high numbers, but relatively painless)

January 6, 2012 - 3:04pm
EmpowHER Guest
Anonymous (reply to bentebente)

Hi Bente
I like you have a floating kidney that doesn´t cause me that much pain but rather high pulse(when standig or sitting too long), dizziness when walking, nausea and tiredness. Did you experience any more of your symptoms after surgery? I live in Denmark and they don´t have much experience with the condition here(not at my hospital at least). I went for a consultation today and the urologist had never seen a patient with this condition before. She even said that she didn´t believe that a floating kindney could cause the kinds of symptoms that I have! I´ve read on several forums now and it seems that others have the same kinds of symptoms allthougt the main symptom seems to be pain. I do have some pain but I´m more bothered by the high puls and dizziness. I just want to know if the surgery makes those symptoms go away? Please let me know how you feel 1 1/2 years after the surgery.
Alice

October 11, 2012 - 6:08am
(reply to Anonymous)

My symtoms have decreased considerably after sugery. You should have a renography (Nuclear medicine) to invstigate the functional disturbances of your kidney. Before surgery I did this lying Down, and standing. The function of the right kidney deceased 40% compard to the left when stading. Postoperative rengraphy: my right kidney has better function than the left kidney...I had my surgery in Norway. I know they have done more than 10 more patients at myhospital after my surgery.

April 13, 2015 - 1:34pm
(reply to bentebente)

Can you advise on who could do this type of surgery in Denmark? How are you now?

December 3, 2018 - 4:46pm
EmpowHER Guest
Anonymous (reply to bentebente)

Hi Bente,
Did you had open surgery or laparoscopic surgery? I have to decide thursday and am really curious in how people experienced this.
Thanks a lot, Nileve

September 23, 2012 - 9:29am

hi !

well, i just got the xrays of my upright abdomen and sure enough---i diagnosed myself correctly with a movable right kidney. it descends 1.5 vertebrae when i stand up. i wanted to ask you---now what are you doing for your kidney? are you just taking pain meds and dealing with it or did you have surgery again? do you know whether the kidney fell further over time or whether it only reached the same place ? does it cause any other symptoms for your besides pain? i have pain mostly when i slouch forward, not much when i'm standing up, and sometimes i have random days of bad nausea and general malaise. i also have a TON of heart palpitations which i read that movable kidney can cause.

my last question is: did you try anything mechanical for the relief of your pain? exercises / diet / etc. ? and where did you get the surgery done ?

it feels very comforting to talk to someone who has this same problem...yay for the internet ---it's is useful after all !

hope you're having a beautiful day today :)

November 5, 2011 - 9:15am
(reply to rmw77)

Hi!

I´m so happy I found this site! It's so interesting to meet people who have the same condition and hear their stories. I have also been diagnosed with a floating kidney. It took a while for the doctors to figure it out and x-ray showed nothing, obviously, as the kidney fell into it's normal position when I lay down. At a point I really thought the doctor's considered me hysterical. Finally, after some pushing from my part, they did an ultrasound with me standing up and they found it. Relief! When you find a big lump in your stomach it's easy to think it's cancer... so a floating kidney is a much better outcome.

However, I have some pain and I feel sick a lot and haven't been able to eat properly lately. I have an appointment to the urologist (sorry, don't know the proper word, I'm from Sweden :) and hopefully he/she can come up with some solution. It seems like it's a rare condition?

Does anyone know if it's right that it mostly happens to women who are tall and slim, who exercise a lot and eat to little? I am/do all of these things. Can it get better if you get fatter? I also did an hysterectomy in 2010 and one of the doctors said that it could have some kind of effect.

I also wonder if anyone knows if it's dangerous to run when you have this? I live for running and right now I'm too scared to run.

I hope everything works out for everyone here.

Happy New Year by the way :)

January 2, 2012 - 7:42am
(reply to TinaStina)

I am so glad to have found this site, I have been going through the same issues, I have had a lump that moves about descending from my ribcage to right about my belly button. There are days where my right flank is absolutely on fire as well as the right front below my rib cage. The handfuls of Motrin, Tylenol, Alieve are not even touching the pain. Eating is not something that goes well with pain and I have nausea especially in the morning when I stand upright, right after getting out of bed. MRI, CT all showed nothing but gallstones and kidney cysts. Because I was laying on my back, so feeling like my Dr felt I was a nutcase (even though my ob/gyn felt it as well as my primary doctor) he luckily ordered an ultrasound of my liver and gallbladder due to the nausea well when I turned on my side out popped the lump and the ultrasound tech saw it too and got photos of it!! Finally something to prove Im not crazy!!!! Only problem I seem to have now is that "because this is so rare" its like the docs still dont quite know what to do or believe that this could possibly be causing me pain!! By the end of my work day I am in so much pain that all I want to do is come home and lay down. My weight is down from 130 to 115 (very slim for my height) and I have been making an effort to put weight on by drinking ensure shakes and trying to eat more! I had a hysterectomy in 2007 and had quite a lot of ovarian cyst and endometriosis prior to that. I am curious if anyone could let me know how their surgery turned out or how the found a qualified physician since doctors dont seem to be very schooled in this as I am being told "its rare" and "just not common"

September 16, 2012 - 4:42pm
EmpowHER Guest
Anonymous (reply to hoonen)

I'm very glad I found this site too. So much recognition in the symptoms you describe. What I'm hearing from my docter is that the pain and nassua is coming from the blocking of the ureter (is that an English word?) which also can cause high blood pressure. I also lost weight and just was only 108 pounds and I'm pretty tall. So now I'm drinking Ensureshakes as well. It works for me. Are you gonna have surgery soon? Mine is planned this thursday, I can keep you updated if you like.
Nileve

September 23, 2012 - 9:40am
(reply to Anonymous)

I sure hope you are doing well! Just checking in on you!

October 2, 2012 - 10:09pm
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