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nephropexy for nephroptosis
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happygirl74 posted:
Hello everybody,

I was diagnosed with right nephroptosis and am schedueled to get laporoscopic nephropexy on Feb 15. I was wondering if anyone had any information about this surgery. How was the surgery? How long is the recovery time? How is the success rate? I have researched it but am looking for personal story information. I am very thankful that I have found this site. Every one has been wonderful with infromation and advice. Thank you very much!
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cracket responded:
Hi happygirl74,
After six months of pain, I finally have been diagnosed with nephroptosis and am scheduled to see the surgeon this week. I wanted to know about your surgery and recovery. Do you have any advice to pass along?

Hope you're better than ever!
 
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GigiLong responded:
I have an IVP that shows that I have nephroptosis and have been having symptoms for 1 1/2 years, but I can't find a doctor in Alabama that even knows anything about this condition or believes it even is really causing my problems. I just saw a urologist today who is an associate professor of urology at the University of Alabama-Birmingham who hasn't ever every seen or dealt with a patient with this problem. I saw him since the local urologist that I saw had never dealt with this problem, or any of the other 9 or 10 urologists in town. I didn't see them all, just called their offices. I have had an ultrasound, CT, Hida Scan, colonoscopy, small bowel follow through, IVP (which finally showed the problem) and today a renal scan that was once again done laying flat which "surprisingly" showed no renal function problem. I told the urologist today (who once again is an associate professor at the university hospital) that it wouldn't show any problems unless it was taken standing up which makes my ureter kink. He said that is true and that he probably should have had it taken upright and that I would need to have it taken over. But since he had never even treated a patient with this or has never done the surgery I know he wouldn't be fixing it for me. I even had my gallbladder removed last year because they thought that might have been the problem. I need to find a doctor who understands what is going on and who can help me. How can I go about this?
 
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happygirl74 replied to GigiLong's response:
Hello GigiLong,

I am so sorry you are having such a hard time with finding a doctor. Maybe the Associate Professor of Urology can find someone who has dealt with this. Another idea, try calling your insurance company. They may be able to search a data base to find one.

As for me, I did have nephropexy Feb. 15 but it failed. 2 weeks ago my kidney fell back down into my abdomen...ugh! I am going for a KUB upright today to confirm. I had my surfer done at Duke by one of the "supposed" to be one of the best doctors...yeah right. I have called 3 times and he has yet returned my call. I had to go to my primary to get the KUB ordered.

This is such a difficult thing to deal with. I really wish there was more help for us. I wish you luck and keep us posted.
 
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happygirl74 replied to happygirl74's response:
Cracket,

Did you ever have surgery? How are you doing?
 
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MikeSmi replied to happygirl74's response:
Happygirl74,

How long did your kidney stay in the correct position before it fell back down? Did you have relief from your symptoms during that time? How was the recovery? Where are you at with this now?

I am a 38 year old male who was recently diagnosed with a mobile kidney. My right kidney is fully mobile"026. When I am lying down it is where it should be and when I am erect, the kidney is in the lower right area of my abdomen. This, along with the rarity of this condition, made it very hard to diagnose. In fact, I saw four different doctors, who could palpate the mass but yet dismissed it as an abdominal wall cyst, etc. When I questioned my family doctor further, he went so far as to ask me where I got my medical degree from?

Finally, after eight months of searching, I found a proctologist, who correctly identified it as a mobile kidney. He sent me for an MRI, but when that didn't show anything abnormal, he dismissed it as nothing. When I googled the signs and symptoms of a mobile kidney, I knew immediately that this is what was wrong with me.
I made an appointment with a urologist. At first he doubted me, but an ultra sound confirmed the diagnosis. The kidney could be seen moving while I transitioned from an erect to a supine position. I also was able to press on my abdomen and move the kidney while she was holding the ultrasound probe. When an ultrasound technician says, "Wow"026That's creepy!" you know it's something rare.

I have had terrible GI symptoms. My GI symptoms started out as acid reflux and heartburn. It got worse over a few weeks' time and eventually I knew that there was something more wrong"026so I went to see a Gastroenterologist. I was put on PPIs to reduce the stomach acid, but none of them seemed to be strong enough. I ended up taking 40mg Nexiums twice per day just to control the heartburn. He also sent me for a PH monitor and an esophagram to test the functionality of my esophagus. Both of these tests came back normal. I continued to get worse and eventually was only able to eat small plain meals like chicken and baked potatoes. Anything spicy would trigger reflux and stomach cramping that would keep me up all night. These symptoms continued to increase and began to include a bloated feeling in my stomach. I am still able to go to work, but by the end of the day, I am very uncomfortable and have a sick nauseous feeling that is only relieved by lying down. It seems like the symptoms are aggravated by sitting at a computer for extended periods of time. The more I'm up and moving around, the better I feel. Happygirl74 posted a paragraph that summed it up very well"026

"My GI and Intestinal problems have been horrible. I sometimes feel like my intestines stop working when I am standing up. Then when I lay down they start working again. It is crazy. Not to mention the acid reflux, nausea, constipation, bloating, extreme gas and abdominal pressure. I have lost almost 8 pounds."

As for the kidney, I have only had mild symptoms of abdominal pain. The pain is both in front where the kidney is laying and in the back where the kidney should be. Because I am a thin build, I can easily feel the kidney in my abdomen to the right of my belly button. I can also tell that my right side feels more full than my left side.
At the time of this writing, I have finally located two doctors in the US who seem to be knowledgeable about this. It took weeks or even months of researching this online to locate these doctors. One of them advised that a renal scan needs to be done to determine if blood flow or urine flow is compromised when in the upright position. Impairment of either of these flows will warrant nephroplexy surgery. I met with the other doctor and he said that some of my symptoms are likely caused by the kidney. He has done nephroplexy surgeries in the past and has a very high success rate. He is willing to do this for me.
 
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happygirl74 replied to MikeSmi's response:
Hello MIkeSmi,

It is amazing to me to see how many people suffer from nephroptosis. I am happy you stayed determined and found some answers.

I had a single port laparoscopy done. I only had one incision through my belly button. there is a post somewhere on here from another lady who had the surgery done but her surgeon used a different technique. I tried to find it but I couldn't. Try doing a search on these boards for nephroptosis. I am not sure if it is in response to one of my posts or someone else's.

After surgery my kidney fell back down approximately a month later. As far as relief from symptoms, it is difficult for me to say because I was only a month post op. I still was healing from the surgery so I can't really answer this one for you. Recovery was rather simple. The first week was difficult. By the second week I was taking minimal pain medication. I was out of work for 4 weeks because I work in a cafeteria where light duty is not permitted. I have read others went back to work in a week.

As far as where I am know. I just chose to live with it at this point. Symptoms are a little better since surgery. I don't have a lot of pain. My kidney is laying further near my hip than my belly button rather than before surgery, it was closer to the belly button. I still have days where I have the feeling of my intestines not working. I always have the feeling of my right side being more full than the left. I do have days when I have a slight dull ache in my abdomen and back. Heartburn is an issue sometimes but not always. The most recent issue I am dealing with is frequent UTI's. I try to keep my water intake up but every other month I am running to the doctor for antibiotics.

The interesting thing is both of my kidneys have prolapsed but the only time the left one is bothersome is if I cough...I can actually feel it move. I too can move my right kidney around, which I try not to touch because for some reason it makes my symptoms worse. When I had surgery the surgeon said that my right kidney was adhering to my colon, I just hope it doesn't do that again.

I hope I answered all your questions. I feel like I rambled on and on, sorry. I wish you luck. If you have any other questions please feel free to ask.
 
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ButterflyGirl07 replied to happygirl74's response:
HappyGirl 74, did you see Dr. Ferrandino at Duke? I had an IVP in July to confirm right Nephroptosis and the radiologist mentioned she had only ever seen one other patient with this problem and she saw the same Doctor, who ended up laparascopically removing a 7cm cyst from my left kidney about a month ago. At my surgical follow-up, he didn't examine me or check my sutures, just told me to come back in 3 months for an ultrasound. When I asked about whether Nephroptosis on the right side could be causing my other symptoms, he finally confirmed that my kidney is dropping 2 1/2 to 3 vertebrae upon standing. No wonder he didn't want to discuss correcting my right kidney if yours failed so quickly! Not that I would ever let him touch me again after I "must have bled out somewhere" right after surgery and received two units of blood and had to stay in the hospital for 4 nights. Then I was seeing blood in my urine again at my follow up, but neither the Doctor or the nurse ordered the test for the urine sample I left. Found out that wonderful news when I called for the result the following week. Then I was asked what happened with the blood panel that was ordered. What blood panel??? Might've helped if someone had bothered to mention that while I was there since I live 3 hours away! He also lost my paperwork that I asked him to fill out for my employer so I had to call and get someone to fax it again....then his secretary calls me (after he got back from vacation) to tell me I need to mail a check for $20 to cover the charge for filling out the paperwork. (At this point, 3 weeks have passed since I originally left the paperwork). I really WISH more Doctors were familiar with Nephroptosis. I'm SO tired of shuffling from one office to the next with my films and paperwork that no one even bothers to look at. Then I get contradicting information and am again left struggling to find someone who can help me. My Gynecologist is doing an ultrasound tomorrow and I'll hopefully have better results! He's the first person who seems concerned and he said it's NOT normal to have blood in my urine since 2010. Thanks for sharing your information and please keep searching until you find someone who can help you!
 
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GigiLong replied to MikeSmi's response:
Hey MikeSmi
I had two renal scans, the first just laying down because the doctor didn't know what he was doing, and the second half laying down, half sitting up. Of course the first one was normal, and the second one the doctor said there was no obstruction and that it was just about a perfect scan. He even showed me the picture. This was a urologist at the University of Florida. After he left I asked his associate that it was the laying down portion that he showed me, and what were the results of the sitting up. He kinda blew me off and of course they did not want to help me since my renal scan showed normal. But when I got a copy of the scan from them and looked at it myself when I am sitting up my renal function drops 7% on my right side. I know this is not a great amount, but it shows that something is going on which they did not tell me about. My purpose on telling you this is that they won't do anything without an obstruction, like you said. But it might now be obstructing at the very moment that the scan is taken. I believe it gets into a different position at different times and that is what either causes me to be in pain or not. The renal scans were the most unconfortable tests I had taken and would not want to do it again. I finally found a local doctor who is going to do my nephropexy. He said he didn't even know why they did renal scans since it is obvious on my IVP that my kidney is dropping. He agreed that if it is not in a bad postion at the moment the scan is taken it won't show anything. Hope you get the help you are looking for. It is so good to have others going through this journey because it is next to impossible to have anyone else understand what we are going through. Good luck and keep us all posted.
 
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happygirl74 replied to GigiLong's response:
Butterflygirl07

Yes, I did see Dr. Ferrandino at Duke. I am sorry you had such a terrible experience with him. I too was not pleased with him. In all honesty I was not pleased with Duke in general. You say you live three hours away...so do I. I understand your frustration with having to deal with that office. When my kidney prolapsed after surgery I called several times but never received a response from them. I had to threaten them in order for them to listen to me and that was three weeks later! I hope you find someone who can help you. I am currently just "living" with it because it seems easier than dealing with the red tape that comes along with getting fixed.
 
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happygirl74 replied to ButterflyGirl07's response:
Yes, I did see Dr. Ferrandino at Duke. I am sorry you had such a terrible experience with him. I too was not pleased with him. In all honesty I was not pleased with Duke in general. You say you live three hours away...so do I. I understand your frustration with having to deal with that office. When my kidney prolapsed after surgery I called several times but never received a response from them. I had to threaten them in order for them to listen to me and that was three weeks later! I hope you find someone who can help you. I am currently just "living" with it because it seems easier than dealing with the red tape that comes along with getting fixed.
 
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MikeSmi replied to happygirl74's response:
Thanks for the replies. It does help to hear what others are going through. Happygirl, It's too bad that your kidney fell back down and your suffering with frequent UTIs. You mentioned in your post that there are different procedures. The doctor that I have talked to said that simply stitching the kidney back into position doesn't always work. The area around the kidney is made of soft fatty tissue and the weight of the kidney can eventually pull the stitches out. If there is enough scar tissue around the stitches it may hold, or it may not. He goes in laproscopically through four of five places and scrapes the fat off of the kidney and surrounding tissue to create a larger area for scar tissue to form. The sutures are to hold the kidney in place until the scar tissue forms.
Post op, he requires the patient to remain flat (bed rest) for four weeks, the only exception is getting up to go to the bathroom. This helps to ensure the kidney stays in place long enough for the scar tissue to form.
He said he has done between five and ten of these and has a 100% success rate as far as the kidney staying in place. Not all of his patients have had relief from all of their symptoms, but that doesn't surprise me due to the broad range of symptoms that occur. My worst symptom is acid reflux and he was not sure if the kidney could be causing the reflux. I have read in medical journals that the kidney can cause stomach and GI problems, so i suppose it may be possible. I know you mentioned acid reflux also.
Good Luck and keep us informed.
 
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therite1 replied to MikeSmi's response:
Mike please update and let us know how you are doing. Also please let me know who your doc was and where. I am desperate to find a doctor for my daughter. Her condition is so severe and her kidney so far to the front that a nephrologist told her that it could tear the artery if she were to get struck or lifted heavy weights etc. You can literally hold her kidney in your hand from the front! Anyone with info on a doctor who might consider doing this on state medical only (my daughter lost her insurance when she lost her job due to this condition) She'd move to where ever if they'd do it. Thanks We'd especially like to find a doctor who uses clamps instead of sutures. But with a success rate like Mikes docs, she'd be willing to try. Thanks
 
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MikeSmi replied to therite1's response:
therite1... I am still trying to decide whether or not to have this done. Surgery is a big decision. I have changed my diet and have less GI issues now. I'm eating more soft foods like smoothies and cereal.... As far as the doctor that is willing to do this.... webmd doesn't allow people to recommend doctors. I've seen other posts on here where moderators have removed names of doctors and deleted posts. I also would want his permission before posting his name online. I understand how frustrating the search can be and how important it is that you find the right doctor. If you click on my screen name, I have temporarily listed my contact info.
 
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MikeSmi replied to GigiLong's response:
GigiLong, Just wondered how you are doing? You posted that you found a doctor who would help you. Did you have your surgery yet? What method of attachment does your doctor use? Keep us posted.


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