I am a 28 year old female with symptomatic Polycystic Kidney Disease. My kidneys are about twice the normal size and are both filled with cysts. For years, when standing I have had a very large mass that will descend into my abdomen on my right side. With a firm "grab and push" I can move the mass to under my rib cage and it will stay put for an hour or so. I have had family and friends feel and move the mass just to confirm that I'm not imagining it. However, every doctor I have spoken with, including my nephrologist, has looked at me like I was nutty when I described it and ultrasounds show nothing out of the normal PKD findings. I was recently informed of "floating kidneys" that will descend into the abdomen, but are rarely diagnosed because when the person lays down for CT scans and ultrasounds, the kidney settles in its normal place. Has anyone had experiene with this or have any advice on how to convince a doctor I am not crazy?
You are not going to convince your doctor of anything,they are kinda set in there ways but if the ultrasound seems ok i wouldnt worry,if something is wrong it will eventually show up.My dad went a whole year very sick and the doctors could not find anything he had to retire and start on heart rythem meds but they found nothing wrong with his heart and he dropped his weight down to 125lbs and even had a colonoscopy 3 months before his appendix ruptured,come to find out it was full of microscopic cancer which has went to his colon,sooo he had part of his colon removed and his gallbladder also because of inflamation and a couple of times i thought i was going to lose him but i think he is getting back to normal.Be patient your body will tell these know it all doctors when something is not right. chris
Ask your urologist to examine you standing up. I had a similar experience where I went for ultrasounds and different testing and finally after all the doctors telling there was nothing when I knew I could feel this huge mass, I told my urologist to PLEASE check me while standing up and as soon as he did that, he diagnosed me on the spot. He sent me afterwards for ultrasound on my side just like trayc33, to confirm the diagnosis.
Any of you know of any possible complications with pregnancy if you have a floating kidney? Or any of you with floating kidneys ever gotten pregnant? Thanks
I just had surgery in May for that exact issue (nephroptosis). I had multiple test that always were normal, until I decided to go to a University Hospital. Either an IVP with pictures taken while lying and then standing will show the exact degree that your kidney is falling or a lasix renal scan in supine and upright positions will show your issue. A lot of doctors think this is a mythical condition, while others do take it seriously, however, surgery is only performed if you are symptomatic. Good news though, they are able to perform a laproscopic nephropexy! (minimally invasive surgical fixation of the kidney)
And to answer jewels1235 question, I'm the momma to three wonderful boys, but pregnancy definitely causes a whole new set of issues for those of us with floating kidneys:)
Hi, just wondering "got my life back" what type of difficulties did you have while pregnant with the floating kidney?? I'm so scared that if I got pregnant, that the kidney would get stuck between my abdominal wall and the foetus which would bring on more of the attacks that I have with this floating kidney. Did you have more attacks during pregnancy and did you doctors think you would have any problems?
I had several kidney stones and hydronephrosis while pregnant (mostly due to improper or inability of the kidney to drain), but at that time my nephroptosis hadn't been diagnosed. If you have a good doctor (OB/GYN and Urologist) you should have minimal issues during pregnancy. If the docs are watching you closely this should avoid serious complication. Good luck!
i just wanted to ask you what you felt like with the floating kidney. ive been having bad back pain on both sides where my kidneys are located. i know its not a stone i have them all the time so i can tell the difference. so i started thinking that i keep getting infections. my first urine test showed an infection but not the second one. ive had two anitboitcs with no relief. so my pcp sent me to my urologist. i told him my syptoms which are: pain at both of my kidneys like my back is strained or needs to pop, it is relieved when i pee (somewhat), when i get up to fast i feel dizzy, i have some pain in my tubes going to my bladder, i feel nausated alot, i also feel bloated some in my stomach, (i though i might be pregnant ( two tests--both negiative), it feels so good to lay down. so he gave me some vesicare and said it sounds like im having spasms. i thought that i was starting to help by it still hurts. he scheduled me an appointment for feb 23 for a ct scan. but after researching floating kidneys im thinking about asking if he would change it to an xray laying down and standing. i just wanted to know if this sounds to what you were going through. also im 26, i am thin. some of the material i read said that it is common in young women that are thin and have long waists. well if you dont mind let me know what you think!! thanks
I've had urinary tract infections since I was 6 months old (now I am 37). They even did an IVP on me then but could not find anything wrong. I think everyone reacts differently and a GOOD doctor knows that their "text books" are not always right when it comes to symptoms from one person to the next. I have never experienced back pain during a kidney infection, and I have had them so bad that I should have been hospitalized. They have caused me to pass out though. I would say that my infections have increased since I have become an adult (I think because I sit in an office alot). Despite the doctors saying I should avoid "jumping" activities in order to prevent trauma, I think all the activity I had as a kid (like trampolines) kept my ureter from getting kinked up for long periods as it does now due to sitting all day.
My pain occurs in my lower abdomen just below my belly button and near my pelvis. I had another IVP when I was about 30 which finally caught it on film. The thing was sitting in a lump behind my pelvis and the ureter was like a garden hose all tangled up on the ground. I asked my urologist if I should hang upside down to fix it (his nurse laughed but he looked at me as if I was an idiot). He also did not think surgery was "worth it"....coming from the guy that doesn't have UTI all the time. On the other hand, my chiropractor thought hanging upsidedown was a great idea as it is a structural problem that can be aided thru positional therapy.
I wondered if you had your kidney problem fixed??? I have had a nephropexy done twice on my right kidney performed by Dr Thomas Jarrett at George Washington University.. I have seen urologist in PA and SC that did not take my condition seriously but Dr. Jarrett changed my life. It was well worth the trip however I did manage to tear it off by forgetting myself and jumping off the top of my truck bed he reattached it and placed it in a mesh net. There are times that I feel that it may be off again but hey it lasted 8 years this time around and well worth it. Good luck to all of you NEVER GIVE UP and NEVER LISTEN to things that make no sense to your gut...
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