Nephroptosis… Finally

Okay… so this is PRIMARILY about epilepsy. Β But this adventure has been just too much not to share.

 

Nephroptosis
It happens most often to young women (late teens through early thirties) who are slender, active, and who typically have kidney stones.  The typical patient has been tested for almost everything and usually doctors have written them off as hypochondriacs or in search of pain medicine.
In our case, an answer is what we were in search of not pain meds.  In fact, she takes very few of the pain meds that the doctor has given her, preferring to just take the edge off.
What were her symptoms?  Looking back over the last... probably... year... I can look at things that may not actually be symptoms but maybe they are... 

pain in one kidney
nausea
vomiting
thirst
weight loss
frequent urination, but often very little at a time
dehydration
protein in her urine
kidney stones in both kidneys (not overly common in 16 year olds)
She rides in the back seat of the car laying down.

We've been tested for diabetes, lupus, Positional protienuria... so many things.

I've been fighting with doctors to listen to me, to listen to her.  Even when the doctor listens, I'm not entirely sure they hear.

I called the nephrologist and told him how much pain she was in over one kidney.  They suggested it was a pulled muscle and maybe she should see a orthopedist.  Or maybe if it doesn't get better with NSAIDs maybe see her urologist (who sent me to THEM in the first place) to see what they said.
I called the PCP and told them that she is throwing up.  They suggested that they did the work up on her for autoimmune diseases.  If she is feeling nauseous maybe she should see a gastro-enterologist.  The super duper meds they seemed to have given her were the "bestest they could do" maybe it is just the heat... or a stomach virus.

I finally got angry and talked to the triage nurse at the urologist's office and they scheduled me with an amazing doctor since the kidney stones doctor was in surgery.  Pure dumb luck?  Best thing that happened.
The new doctor listened to her.  He poked and prodded and talked and listened and ordered an IVP... with special instructions... pictures with a DEEP inhale... more with a DEEP exhale.  What did it show?  Her kidney drops minimally three vertibrae.  When she stands it ends up in her pelvis.  The uritor looks like a night crawler trying to free itself from a fish hook.

Nephroptosis is rare.  Most doctors and nurses have to spend time digging for information when you tell them what you have been diagnosed with.
It was amazing to see the difference in my kid when they believed her about the pain and other symptoms.  She hurts (today she hurt about a 9.8) and she still throws up... but they believe her and that makes so much difference in her.  she is scared of the surgery, but okay with having it finally fixed.  

Anyone have a similar story?  Anyone want to chat and commiserate?Now... surgery... in just a little over a week.
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58 Comments (+add yours?)

  1. BlueSkiesAhead
    Oct 17, 2011 @ 20:23:15

    I am wondering if my 13 year old daughter might be suffering from nephroptosis as well. A month ago, she became ill with what I considered a stomach bug at first, but then it continued and the pain settled in her right lower quadrant. We’ve been to the ER twice on suspicion of appendicitis, no fever, no flags in the bloodwork, no flags in the urine. They sent us home with a diagnosis of gastroenteritis and instructions to manage pain with NSAIDs. Pain is decreased when she lies down, increased when she walks, and greatly increased when she tries to run. It is even exacerbated by playing her instrument in band. Countless trips to pcp, visit with GI and cardiologist and still nothing, and no real move to keep looking. I asked today for an upright scan, and was dismissed, but they would dipstick her urine if that made me feel better. It’s not about ME feeling better; focus on the patient who has level 8 pain.

    Reply

    • alicorndreams
      Oct 30, 2011 @ 06:13:13

      Jana… YES YES YES… find a urologist who will listen to you! It may take some head beating to get them to listen. They tend to discount kids because kids don’t have kidney problems. It will probably be diagnosed most easily with an IVP x-ray (which according to Amandya isn’t a lot of fun). Don’t let them blow you off!!!

      Reply

  2. Judi Wiskus
    Oct 19, 2011 @ 20:16:03

    I read “Nephroptosis ….Finally” with great interest as I was diagnosed with hydronephrosis and nephroptosis at age 26 after a year of being told by my local physician that it was all in my head and I was a hypochondriac. He finally ordered x-rays to prove to me that I was all right. He looked at the first one and the next day I was sent to Iowa City University Hospital. I had the surgery. I am doing well and writing to give you hope and optomism.

    My dx was Aug 23, 1967 and I have had very few glitchesin 40+ years. I completed college at age 40, earned my Master Degree at age 59. I have 4 children. Two were born after the surgery.

    You may wonder why I found your post. My home was in the “great” flood of 2011
    and everything was evacuated. I am in the process of putting my home and life back together and found my hospital papers. I was researching when I ran across your blog. I know how frightened you must be and hope knowing that I have lived a normal life for almost 70 years will ease the fears you have for your daughter.

    I hope I have not overstepped any boundries. Your story touched me both personally and professionally. If I can be of any help please feel free to contact me at judi@wiskus.net.

    Reply

    • alicorndreams
      Oct 30, 2011 @ 06:10:19

      It’s been a long few weeks. I’m finally trying to pull my head back together.
      thank you for your reply. You aren’t overstepping. There is SO little information out there… we need to stick together. And we need to spread the word.
      I can’t believe how long it takes people to believe the information and the symptoms. I got so angry about people not taking my baby seriously.
      It is great to hear how successful your life has been post-diagnosis. Amandya will be glad to hear that she isn’t alone and she isn’t totally doomed to pain forever.

      Reply

      • Nicole
        Jan 13, 2012 @ 12:52:42

        I had a floating kidney for 5 years before I found. Doctor that could help me. He first doctor took out my gallbladder thinking that’s what it was. Finally the 9th doctor did the trick but I was in horrendous pain for 5 years straight. I had surgery to fix it about a year and a half ago and have been fine up until about two weeks ago. Now it has been hurting just like before everyday since. I would like to go see my doctor that did the surgery but a couple months ago I moved out of state! If anyone has any information on doctors in California or would just like to talk that would be great. Living with this can make you feel all alone sometimes. My email is nicolez143@aol.com

        Reply

        • alicorndreams
          Jan 13, 2012 @ 15:06:07

          I don’t know if our urologist knows anyone on the west coast who knows about it. Central Texas doesn’t have many but we have a great one. People really don’t understand it at all and what they don’t understand they tend to not believe
          Hugs Nicole

          Reply

  3. Alisha Pendergraff
    Nov 10, 2011 @ 08:48:13

    Well, I have been seen by the same Urologist for almost 2 years. LOADS of stents later, hospital trips, PICC Lines, medication drips, tears, missing work, pain, throwing up, nauseous, losing weight. I get put in the hospital, my urologist is on vacation, his partner steps in and runs a few tests, takes out my stent and tilts the operating table and BAM!!!!!!!!!!! My kidney FLOPS! The ureter compresses and I HAVE my diagnosis! Nephroptosis! My surgery is scheduled, my urologist comes back and comes to my room, says I need a “psych” evaluation, and discharges me!!!! He says he wants me to go to a University hospital cause he doesn’t believe that is even a real diagnosis. I SIT stunned, my mother and sister as well, I am shuffled from the hospital in pain, N/V and the best he can do is I need a Psych evaluation. Let me add here that I am an RN in a hospital, I do not nor have I ever had psychiatric issues. Nor had I ever heard of this diagnosis, but it is MINE now and I JUST FOUND today a Urologist who DOES know what this is and deals with it. I am waiting on an appt. to go see him, to get answers, for someone to tell me how to fix this! This has been a LESSON to me as a nurse, NEVER EVER discount ANYONES words on how they feel inside or physically. I, will never, see my old Urologist again. I WILL shove my new Urologists paperwork in his nose when I see him again and remind him how UNPROFESSIONAL he was in my hour of need.

    GOOD LUCK to you and your family in this…I AGREE< finding information is near impossible, as it is so rare a disorder. I am going to change that!!!

    Reply

    • alicorndreams
      Nov 10, 2011 @ 10:30:33

      I’m glad you have finally found a doctor who will listen. It is apparently a big thing with doctors to know WAY more about everything than mere patients (and it doesn’t help that most doctors are males and the majority of patients are women….

      the surgeon said that his first nephrotic kidney patient was a nurse, too. and it was years that she worked at getting diagnosed.

      I thought about trying to get something like this on mystery diagnosis… but… it isn’t awfully glamorous…

      Reply

  4. Cathryn
    Nov 29, 2011 @ 10:58:48

    I also have spent the last 15 years of my life (I’m turning 31 next month) fighting to get doctors to listen to me, to be on my side and it has been a roller coaster ride from hell to say the least. I have been told everything from depression to carcinoid to pheochromocytoma to Medullary Sponge Kidney & Kidney Stone disease. While trying to find out what was wrong with me, I discovered I have multiple autoimmune diseases, osteoperosis, lesions in my pituitary gland and psoriatic arthritis. No one would listen, but I knew that blood in the urine for years and vomiting were not normal. It’s the worst feeling in the world to be told you are basically crazy by your doctor; “It’s all in your head”. I also had a urologist tell me that because I have a normal renal scan/normal renal function, the pain I was feeling was muscular and no way could be my kidney, Go see a physical therapist. I have refused Vicodin more times than I care to remember, as I don’t want to be medicated, I want to be fixed. A Primary Care Doctor put me on Ritalin and then Dexedrine (strong amphetamine) for the memory issues, brain fog and fatigue. Nephrologists told me to drink more water, as I had tons of little stones in my kidney (called gravel), which only made me feel worse, as increased water increases the pressue in an already bloated kidney.My Gastroenterologists have scoped me many, many times and I’ve been through the ringer with these people, test after test showing a lot of little issues but nothing to explain everything I was going through. (Interestingly enough, one of my surgeons, who is very knowledgable, told me that many women present with GI related issues and only GI issues). My Cardiologist diagnosed me with Orthostatic Hypotension & Tachycardia and put me on medication but never looked at the kidney/blood pressue connection. I lost about 50 pounds in a year without trying and was always running a low grade fever. I’ve had UTI’s on and off for quite a long time and the answer is always antibiotics but no follow up. I’ve had Doctor’s refused to keep me as a patient because I openly disagreed with them and at times, more knowledgable then they were on the subject at hand. And not one of the “medical professionals” ever took the time to piece it all together.

    In September, two days before I was leaving on my honeymoon, a KUB showed a small 3mm stone stuck in urerter. Not wanting to fly to Europe with an obstruction, one urologist offered lithotripsy but couldn’t do it until after I was supposed to leave & there was no way I was canceling my honeymoon . Another urologist took pity on me, got me in to remove the stone with a scope and that’s when he discovered signifigant renal ptosis. He also found out that the “stones” I’ve been dealing with for 10 years don’t exist; I passed two stones back in 2002. They are plaques (medullary calcinosis) inside my kidney that look like stones but no stones. He also found pus in my kidney, which I believe brought on many of the auto-immune issues I have.

    I’m meeting with two surgeons in the next 3 weeks and will hopefully be having surgery in January. I would love to hear anything and everything people have to share, as this is a very lonely and scary place to be right now. It’s comforting to know I’m not alone but I’m scared to death about the pain & aftermath of the surgery but I know I don’t have a choice and will have to just deal with it, just like I’ve been doing for the majority of my life. No one really understands how chronic, undiagnosed/misdiagnosed disease can impact you mentally as well as physically. I wish the best on your journey πŸ™‚ & thank you in advance for sharing anything you feel comfortable with.

    Reply

  5. Steve
    Jan 14, 2012 @ 06:16:34

    My 19 year old son had surgery to fix his Nephroptosis a year ago this month. When the doctors were telling him (us) that is was in his head then I began telling him that it was in his head. Soon there after a qualified physician properly diagnosed him the the floating kidney disorder…Needless to say I felt horrible during and after the surgery when he was lying in IMMENSE paid from the robotic surgery. Even his grandparents jumped on the “its in your head” wagon that the doctors set up for us… He went from a 4.8 gpa highschool student starting his first semester at USD to being bed ridden after the surgery for weeks if not longer. Immediately after the recovery from the surgery (and it seems that he fully recovered from the disorder), soon after he was diagnosed with thoracic outlet syndrom which as been a long and painful journey of doctor after doctor to find a knowledgable doctor. Again they said these new pains could be in his head……THEY were totally wrong again. Beware of doctors who are the ones with “things in their head”..

    Reply

    • alicorndreams
      Jan 14, 2012 @ 07:20:13

      YES, Steve!!!! Doctors (way too many doctors) are SURE that people (especially teenagers, I think) are looking for attention or are looking for pain pills or are looking for whatever. Sometimes when it is dark and it looks like a horse and it sounds like a horse, SOMETIMES it is a horse… Sometimes it is a zebra and even occasionally a unicorn.
      I looked up thoracic outlet syndrome and… <> this time the pain is NEAR his head!
      Doctors are SO sure that they are SO much more intelligent than anyone and especially young people. I’ve been lucky a few times in having some doctors who will listen, but most of them have either implied or flat out told us that she is making it up. Now she thinks she is crazy. Doctors take oaths to “do no harm”… but they don’t apparently consider doing nothing or treating people without respect to be doing harm.

      Reply

  6. happygirl74
    Jan 15, 2012 @ 11:14:13

    I am so thankful to have found this page. I was just diagnosed with right nephroptosis. It is no thanks to the doctors though. I had seen numerous doctors, ER, primary, Gastro, Gyno, and a urologist. I can feel my kidney in my pelvis and was having gastro symptoms, pain, nausea, weight loss and UTI’s. I cant even work because I can not be upright for too long. These doctors gave me drug after drug. Meds for IBS, Heartburn, pain meds, anti depressants. Pretty much anything they could think of to shut me up. I have a history of kindey stones. I had lithotripsy of the right kidney also uteroscopy with stone removal of the right ureter.
    I had to ask my primary to do a KUB laying down and upright. The KUB showed the kidney drops 2 and a half vertebraes. She sent me to a local urologist who ordered an IVP laying down and erect. The results come back and he says your kidney is functioning normally so I dont think this should be causing you any problems. He tries to send me to a back specialist and tells me I am not special because my kidney fell into my pelvis and that I should try to work on my anxieties. I got irritated and told him to refer me to Duke University with a urological specialist. Thankfully he did.

    I finally get into to Duke to see the specialist. He walks in and pulls up the IVP and says I can see why you are in pain. Apparently my ureter is kinking when my kidney drops. He also noted that I have bilateral nephroptosis but the left one is not symptomatic. I may need to deal with that one in the futue. He schedueld me for surgery in Feb. According to him this doesnt happen often and that it usually takes years for a proper diagnosis. This has been the worse experience I have ever had to deal with. It is not right to be treated as if you are a “crazy person.”

    There needs to be more awareness on this subject. I just wonder how many people out there who may have nephroptosis that have been misdiagnosed and are currently continuing to live that way. It makes me very sad because no one should have to feel like they are crazy!!

    Again, thank you for your story. I am happy your daughter had your support through it all. I hope she is doing well!!

    Reply

    • alicorndreams
      Jan 15, 2012 @ 11:37:31

      It has been so amazing to me how many people have found these posts and who’s stories are so similar. Apparently it is the ureter kinking that causes the pain. I’m surprised that there are people who are asymptomatic at all. Seeing the x-rays of Amandya’s insides, it was easy to see what was going on and what was causing her pain so bad that she was exhausted by the end of every day.

      My heart breaks for the people who are fighting this without anyone to support them.

      Even our urologist said that most doctors just try to placate you or shame you into going away.

      THANK you for your story. I’m glad you found someone to help you!

      Reply

    • lauren
      Jun 04, 2013 @ 11:09:25

      i just had a renal scan with lasix laying down then upright doc says my kidney drop into my pelvis not sure how far but the pain is horrible nausea weight loss fatigue vomiting….waiting on the results of my upright renal scan. i had open surgery on my right kidney about 10 months ago (open pyleoplasty) not sure why im still in soo much pain could it be nephroptosis ive been dealing with this for 4 yrs im only 27 yrs old and scared of surgery

      Reply

      • alicorndreams
        Jun 04, 2013 @ 18:08:54

        The surgery isn’t that bad. It was, for my Amandya, three incisions, each one about as big around as a pencil eraser. She was in the hospital over night and the pain where the kidney falls was almost instantly gone. It was all robotic surgery, and its just a few small stitches that attach the kidney to the abdomen wall.
        You’re the right age group and gender. I would make sure the urologist knows that it is a possibility. It’s still not really recognized as quickly as it should be.
        gentle internet hugs…

        Reply

      • Cate
        Jun 04, 2013 @ 19:28:02

        Hi Lauren,

        I had the surgery in 2011 and trust me, It was not bad at all and I felt better immediately upon waking up after surgery πŸ™‚ Your abs are really sore for a few weeks but you hardly notice it because the horrid pain in your kidney/back area is finally gone. If your urologist wont do the workup for nephroptosis, find one who will. It took me 3 PCPs, 1 nephrologist and 5 Urologists to find a Doctor that believed in nephroptosis, let alone test me for it. Don’t give up hope on getting treatment and if you want to talk more about the surgery, just let me know.

        Reply

  7. Lisa Roberts
    Feb 03, 2012 @ 21:44:37

    I was recently diagnosed with nephroptosis on the right. I have had pain for 8 years. It has recently gotten worse. Like most people with this, I had to push my urologist. She ordered a CT and saw it for herself, and scheduled me to see a surgeon in her office. I saw him today, and will find out next week when my surgery is. I told the surgeon I am in a lot of pain, and as soon as you can do it, that would be great. I may have it as early as next week. Even though this condition is rare and it sucks, it is nice to know I am not alone. Thanks for this website.

    Reply

  8. Cathryn
    Feb 08, 2012 @ 17:30:56

    I have goosebumps and tears at the same time while reading the responses from everyone! This is so exciting to know other people are getting treatment but I’m still very angry that we have had to fight and prove our sanity to our medical community for something very real and very painful!

    I had my surgery on December 13th and I am feeling better than ever! I even experienced a lung collapse (tension pneumothorax) and would have the surgery again, without hesitation. My younger sister, who has eerily had the same health issues that I did at age 22 has recently been diagnosed and is having surgery next week. I feel that I finally have a quality of life now, I honestly never thought I could feel so good.

    We need a voice and to figure out a way to help others with Neproptosis be heard and get treatment in a reasonable amount of time…and treatment for a very serious medical condition, not the “it’s all in your head”.

    If there is anyone who reads this post and would like to help me start gathering support for patient advocacy, please let me know. I would love to start gathering our stories to make a difference…Even if we get Neproptosis back on the possible diagnoses for renal colic, hematuria, kidney stones, pain, etc… we could save other people from what we went through…and also help families better support their loved ones with such an underdiagnosed condition.

    Reply

  9. alicorndreams
    Feb 09, 2012 @ 05:50:21

    Cate and I are going to try to pull together stories of people who have/have had nephroptosis so we can raise awareness and so we can bring support to each other. Please let us know if it is okay to use your story and we can maybe keep some people from having to suffer as long and as painfully (physically and emotionally) as we have

    Reply

  10. alicorndreams
    Feb 09, 2012 @ 06:01:02

    Reply

  11. julie miller
    Jul 09, 2012 @ 11:40:06

    Im a 27 yr old female, one child, hes 2 yrs old. I have been going through the same thing since december of 2011. I have been told by multiple doctors that its a pulled muscle. Ive had countless viles of blood drawn, tests to rule out gallblader issues, scopes, ct scan, ultrasounds, etc. Through all of those test, I was diagnosed with IBS, but in a lot of cases its just a “blanket diagnosis”. im not completely convinced thats whats causing all of my symptoms.

    symptoms:
    pain in right side/abdomen, radiates to my back

    pain is below my last rib and a couple inches to the right of my belly button

    it aches when sitting as well as when im active, also occassional right side pain during intercourse

    i have a movable lump that i can feel with my hand while standing but disapears when i lay down

    nausea, gastro issues, almost constant heartburn, lack of appetite, lost 20lbs and counting

    any of this sound farmiliar?? i cant see myself having to live with all of this for the rest of my life. most people with ibs can get it under control, learn about their triggers, etc, and live pretty normal lives. my symptoms are still restricting my daily life

    Reply

  12. alicorndreams
    Sep 29, 2012 @ 09:33:24

    It sounds a lot like what Amandya had. You need to try to find a Urologist that understands what nephroptosis is. We got really lucky with Doctor Kansas. He sent Amandya for an x-ray after chatting with her (I don’t think it was with iodine I think it was just an x-ray, but it might have been… but they do have other options, I think… ).
    YES, it sounds a lot like what Amandya had been dealing with… the nephroptosis along with gastroparesis. I can’t speak to the intercourse part of it, but the rest of it definitely sounds right.
    Basically (if you think about it) your kidney is not attached to anything to hold it in place. It is free floating in your abdomen. So, when you lay down, it relaxes back into position, but when you stand/sit/walk/anything other than stand it drops as far as your body will allow it to drop.
    I don’t know where you are located in the world, but I know a good guy in central Texas who diagnosed Amandya.
    From what he said when she talked to him… doctors see slender (usually), females (usually) in their teens or twenties (usually) with these symptoms. They jump to the conclusion that is is hysteria (HELLO middle ages!!!) or attention seeking or drug seeking or anything other than what it is. You need someone who is wiling to LISTEN to you and hear what you think is an option. The tests for it aren’t like you want 57 MRIs and a CAT scan and blah blah blah… the x-ray was… take a deep breath in… let it all out… her kidney dropped 4 vertebrae… I think the “standard” stop they look for is like at least one or two vertebrae.
    you can contact me off line at awellsdba@gmail.com
    don’t let them bully you into shutting up. YOU know your body… you know you aren’t a hysterical female.

    Reply

  13. Shannon Goforth
    Oct 13, 2012 @ 23:54:21

    I am 38 years old started experiencing nausea weight loss and felt this moveable lump in my belly. I dropped 15 lbs not having an appetite with the pain and nausea. I decided it was time in June to go to the doctor. I started with my OB/GYN. She felt the lump and told me to go to my regular doc. He sent me for an MRI which showed what was misread as a ” mass” on my liver so he ordered a CT. His office NEVER had the courtesy to even call me back with the results of the CT and still hasn’t to this day!!! I got the report myself and reached out to a friend who worked for a GI doc that specialized in livers. He met with me and told me my lump was a bowel loop. He ordered an endoscope because of my nausea and weight loss. I attempted to explain to him how much pain I was in and the location of the pain. He ordered an ultrasound of my gallbladder and liver. During the ultrasound my lump was nice and visible so I asked the tech if she could tell what it was and she said it was my kidney. Everything I had researched fit with my symptoms. I told the doctor and he said that is just not something that is common and is too rare. I was so upset because he talked to me as if since this was so rare and he had never heard of it I must not have it. So the day came for my endoscope and while I was on the table getting ready for Anesthesia he asked if he could again feel the lump and that day it was sticking out very bad because they had me on my side, he felt it in complete and utter disbelief. He immediately became by biggest cheerleader. I could have cried. Finally someone believed me!!!!! He spoke to a urologist that had NEVER dealt with this so I searched on my own as well. Being so close to a city, St. Louis, with many great hospitals I reached out, at a friends request, to Dr . Mennes at St. Luke’s and he referred me to doctor John MCCarthy at St. Louis Urological Surgeons. My first appt with him I was still unsure until he met with me he felt my stomach, sat down and talked to me about why this has been so difficult to diagnose because one it is so rare and two the test I have had I have been lying down. He immediately sent me to the hospital for IVP sitting, standing, on my side and sure enough they got what they needed to see. He said my kidney drops three inches and folds over when I stand. He said that in his 18 years I will be his 3rd patient with this. He explained that they are going to attach surgical mesh to my kidney then surgically suture the mesh to my abdominal wall. I have found so very few stories online but the ones recently have been success stories. I am a mother of three and work full time and just want to have my life back. The pain has been unbearable and ongoing since June but now that I have a doc that is in my corner he has given me meds to help take the edge off so I can get through the day. My surgery is set for the 24th of October which is taking forever to get here, I feel like a kid waiting for Christmas. I called and begged for a sooner date but apparently there is another surgeon coming in on his day off to assist my doctor so the date has to stay due to the coordinating of their schedules. Thank you for creating this site it’s amazing to read and share with others.

    Reply

    • alicorndreams
      Oct 14, 2012 @ 03:33:11

      I’m so glad that you finally got someone to listen to you… and believe you. Through what Amandya went through, I realized how very lacking the medical profession is in actual professionalism. Only ten more days till your surgery. Prayers that it goes well. You will be amazed how much better you will feel when it is all fixed.

      I’m glad I could help. I know that so few people actually understand what I watched my little girl go through.

      Reply

  14. Shannon Goforth
    Oct 19, 2012 @ 20:33:34

    Completed my pre-op test today and am so anxious. Wednesday 10/24 can’t get here quick enough,,,

    Reply

  15. Pepper
    Apr 30, 2014 @ 08:44:57

    anyone know of a doctor in the louisville, Ky area/

    Reply

    • alicorndreams
      Apr 30, 2014 @ 09:10:49

      I don’t. But maybe we can do some digging!

      Reply

      • Pepper
        May 03, 2014 @ 17:35:23

        thank you I have been miserable for like 17 years now, Had every test you can imagine . Everything lying down. Some of the dr.s just laughed and said a kidney can’t come out of it’s position. Well I haven’t had any tests with iodine as I am highly allergic. Probably why it has not been diagnosed. I have been reading something about renal scans (nuclear) medicine that can diagnose it. But a few radiologist say it won’t work. Don’t want to live like this the rest of my life.

        Reply

  16. jen
    May 31, 2014 @ 21:08:31

    I have been sick for 3 years , recently diagnosed w nephroptosis and await surgery on June 19th 2014.

    Reply

    • alicorndreams
      Jun 01, 2014 @ 04:49:34

      I know it’s scary and I know you have been in pain for years. I’m certain that you will feel better almost immediately after the surgery. It’s amazing how quickly things changed for my daughter when she had her surgery

      Reply

    • DrA Dhawan
      Aug 05, 2014 @ 07:27:46

      Dear jen
      I am having nephroptosis rt kidney ………Please inform whether you have had your surgery……..are you feeling better. ?? Regards Dr A Dhawan

      Reply

      • Cate
        Aug 16, 2014 @ 08:13:50

        yes, I had right side nephroptosis as well. The surgery changed my life. I no longer have pain, I have had very few infections since the surgery and my quality of life has greatly improved. I felt better the moment I woke up from surgery.

        Reply

        • DrA Dhawan
          Aug 29, 2014 @ 06:37:26

          Dear Cate…..can you tell me what where your main symptoms caused by nephroptosis before you got operated…….its been how much time since your operation? ……regards

          Reply

          • Cate
            Aug 29, 2014 @ 07:12:49

            Hi DrA Dhawan- Main symptoms include right side flank pain, malaise, kidney stones, UTIs, including pyelonephritis, renal colic, mirco hematuria over the course of a few years, During fluoroscopy to check for a blockage thought to caused by a stone, the scope & dye would not advance on the right side. They did imaging and that is when they realized my ureter was obstructed/crimped by the weight of my kidney, which showed significant renal ptosis. I had my operation December of 2011 and since then, I have not had any pyelonephritis, renal colic, mirco hematuria and no constant right side flank pain. I still have stones, but the passing them is much less painful now and maybe one UTI since the surgery, but that’s it. I hope this is helpful, please let me know if you have any other questions; I’m happy to share.

            Reply

  17. DrA Dhawan
    Sep 01, 2014 @ 09:11:56

    Thanks for your prompt reply Cate………excuse my late response……I am probably going to be operated upon during this month only………. as in the case of all the other boarders of this blog…..the diagnosis of my problem has been after a painful period of more than 10 yrs………However my symptoms were more of dyspepsia ( gastrointestinal) initially. ….and later on urinary symptoms and dull aching pain in the rt. abdomen….and feeling of hypoxia (probably caused by traction of the major vessels) I am myself an eye surgeon based in India. ……and deeply pained by the fact that the medical fraternity is so unaware of this problem and the multiple difficulties and symptoms it can cause……hopefully if I get all right I will try to get this problem the attention and prompt understanding and treatment that this requires……believe me this blog is helpful for such problems. ……I once again thank@alicorndreams and all the other boarders for there inputs. ………hopefully we will be able to make a difference in the understanding of this problem worldwide

    Reply

    • Cate
      Sep 01, 2014 @ 15:56:54

      A quick follow up DrA Dhawan- I also had gastro related symptoms- I forgot to mention them as they lessened as the kidney/abdominal pain got worse-I had immediate relief after the surgery. My surgeon actually used a method that also put the intestines in the right place- the upper right side was also displaced along with my kidney. I had an duodenal ulcer, hiatial hernia, GERD, IBS ( all of which have gone away since the surgery but presented at the same time I passed my first stone/colic experience). I also had tachycardia( Better after procedure) and postural hypotension (better After procedure).- very much like adrenal related . I did experience a tension pneumothorax during the procedure, but outside of that, no complications or issues.

      My surgeon used this method, I recommend reading it due to the GI related symptoms.

      http://www.scielo.br/scielo.php?script=sci_abstract&pid=S1677-55382010000100003&lng=en&nrm=iso&tlng=en

      Regards,
      Cate

      Reply

  18. DrA Dhawan
    Sep 01, 2014 @ 09:36:21

    I also request other boarders who have been operated upon. …..if they can share their postoperative experiences (immediate as well as the foll ow up after some months or years)……..it will be helpful for the newer patients. ……the maximum encouragement that we can get is from the experience of Judi Wiskus mam who has had surgery for more than 40 yrs now…..my regards to you mam!!!

    Reply

  19. DrA Dhawan
    Sep 02, 2014 @ 05:28:49

    Thanks Cate for the article.!! …..it could definitely be useful……….regards

    Reply

  20. DrA Dhawan
    Sep 26, 2014 @ 23:54:34

    Dear Cate……..got operated 15 days ago. …….the operation took a long time (more than 5 hrs.)…….post operative period was also tough with marked dysuria in the first week. …….probably due to reapted urinary catheterisation …….that improved gradually……..However now there is feeling of urination with delayed emptying (this was a prominent preoperative symptom also)…..I am therefore getting apprehensive regarding the success of the operation and the proper placement of the kidney. …..did you face such symptoms post operatively? ?…..do reply. ….regards

    Reply

    • Cathryn
      Jan 05, 2015 @ 09:55:44

      Hi DrA- I am so sorry about the delay in my response to you. I hope you are feeling better after your procedure. I also have the delayed emptying and even have to stand up to fully empty my bladder. I thought it could be due to the stress and trauma to the ureter from years of living with this and the pulling from the weight of my kidney or like you, I thought it could be related to catherization; My Dr said I might have a sensitive bladder and to try Potassium Citrate. I see him in the next two weeks and can post the follow up- I will be asking the same question of him. I look at success in terms of no more

      Otherwise, are you doing better?

      Reply

  21. healthwealthandbeautycupboard
    Jan 03, 2015 @ 15:40:53

    Thank you for this. I know it’s a while since anyone commented but I’ve been suffering for over 20 odd years and more or less told its in the mind I shouldn’t have pain from it despite me having chronic pain in this region before being told I had a right kidney in my pelvic region

    Reply

  22. A corbin
    Jul 29, 2015 @ 18:01:37

    After more than 2200 Straight Days in Excruciating Agony … ** πŸ˜‚ I am 4 months Post Op and I PRAISE GOD For Miss April SAVING MY LIFE!!!
    Overall, I am AWESOME … However I continue to have pain that feels like “Multiple Bee Stings” I’m assuming this is Nerve Damage repairing itself… has anyone else had this After the Nephropexy??? My family Dr says I should allow myself at least a Year for my body to “Reboot” after all the years spent in Survival Mode…
    Also has anyone been diagnosed with a New Illness after recovering from Nephroptosis (possibly caused by Extreme Stress you had to endure trying to get an Accurate Diagnosis)?? This is a question I’ve been asked by many and I have no idea if it’s ever happened …
    Thank You and Prayers for AN EDUCATED MEDICAL COMMUNITY !!!

    Reply

    • Cathryn
      Jul 30, 2015 @ 07:15:01

      Congratulations! I was also told it would take about 12 months for my body to recover from surgery, as it is a traumatic experience for the body, but it took me about 2 years for my body to get out of the “flight or fight” survival mode. I also had some nerve pain, which I attributed to the new location of my kidney. If you think about it, your kidney was in the wrong location for years and it strained and pulled on veins, arteries, ureters, etc..so I think there is an adjustment time for your body in that regards as well. I also wonder if I have scarring in my ureter, due to the obstruction caused by the weight of my kidney, Also, your adrenal gland sits on your kidney, so how could that not be impacted? I haven’t gotten an answer on the adrenal yet, but I did find a doctor to go a adrenal saliva test, so that might give you more information as well. However, one of the complications from the procedure could be nerve related. I believe it is possible for nerves to get caught up in the clamps or sutures, depending on what approach your surgeon took, so you could ask your surgeon about that. As for new illnesses, specifically due to the stress, I was diagnosed with an (additional) autoimmune disease, which I absolutely believe was caused by the stress from the medical community failing me for years. I would highly recommend Qi Gong, Yoga, Meditation as well as a leaky gut diet program. Those all helped me so much, but it will take a little while.Be patient with yourself, you have been through a lot. Best of luck to you πŸ™‚

      Reply

      • A corbin
        Jul 30, 2015 @ 09:09:44

        God Love You! I lost all composure reading your response πŸ˜‚ … Everyone has become an Expert on How My Recovery Should Go *even though most have Never had a Single Procedure… Much Less, THIS ONE! It is a Very Unique Situation and after a dozen surgeries I’ve never had anything “Fixed” it’s all been “Removed” which leaves that Constant Panic with every ache of “DID IT FAIL!??” “OH Lord Here We Go Again!” … Recovering has become more of a Battle against Myself than I expected, 6+ Years of being told “You’re Wrong” is the worst Form of Mental Torture there is! πŸ˜‰
        Again THANK YOU For the Response and Suggestions … it has given me a Huge Sense of Peace!!

        Reply

        • Cathryn
          Jul 30, 2015 @ 11:02:47

          Glad I could help! Being so sick without support from the medical community is very isolating, but you are never alone. Always listen to yourself and if what “they” say doesn’t match up with what you feel, don’t doubt or dismiss yourself; You know yourself best. One last thing I’ll share with you; My sister also had to have the procedure (hers was not as bad as mine) and I bought us each one of these (link below), as a reminder to never give up. There is always light, even in the darkest of places. Be that light for you and for others πŸ™‚

          http://iheartguts.com/collections/plush-organs/products/colossal-kidney

          Reply

          • Shannon
            Jul 30, 2015 @ 18:50:54

            Not sure if my previous comment made it to the site but I had my procedure October of 2012 and have been in the worst pain ever since I would welcome a physician that would be willing to treat me as my surgeon would no longer see me the second he realized he sutured my kidney onto a bundle of nerves I have been to so many appointments so many doctors and I am still seeking relief. At this point I have gone from an active mother of three who exercised religiously to a depressed female who can’t exercise at all I love connecting with individuals who have had this procedure and can relate to me as the medical community shoves me under the rug

            Reply

            • A corbin
              Jul 30, 2015 @ 20:10:41

              If you’re willing to Travel, Get In Touch with Dr Eric Geisler – UROLOGY TEAM in Austin Texas … HE SAVED MY LIFE!!!! 😍 And April Wells Is My Guardian Angel!!!

              Reply

          • A corbin
            Jul 31, 2015 @ 12:08:18

            This has been added to my MUST HAVE LIST!!!! πŸ˜‡

            Reply

    • Wendy Spencer
      Apr 23, 2016 @ 10:52:53

      I had open nephropexy surgery in 2012, It failed, my kidney didn’t stay in place. So i still have the floating kidney pain, but for 4 years after surgery I had even more pain (which I could never had imagined could be worse) due to the surgery site and bound up nerves, scar and fascia tissue. I recently found a doctor who worked on the surgery site and released the bound up nerves so that is better. I just have the pain I started out wit now since 2011.

      Reply

  23. Nicole Mauriocourt
    Oct 30, 2015 @ 07:55:54

    How wonderful to find out that other people have been dealing with the same problem as my daughter. She is 17 years old and has been dealing with kidney and flank pain, and blood in the urine since she was 6. Her symptoms were so strange that we have been given several different diagnosis over the years. We saw 3 different urologist and ended up at The Medical University of South Carolina. Still no definite answers and we were told she would grow out of it. Back in Jan. of this year she started having the pain more often and more severe. By May we were visiting the ER. Her pediatrician ordered several test (all lying down) but all came back normal. We’ve been sent to physical therapist because it could be muscle spasms, we’ve been to the GYN because it could be an ovarian cyst. They thought it was her gallbladder at one point. The worst was being told it was all in her head. In July her pain had become so severe that she was not able to function normally. As an active and athletic 17 year old this is starting to affect her emotionally. The local urologist we saw asked her a barrage of questions and ordered even more test, all still lying down. Her symptoms besides the severe flank pain in her left side were confusing to all the doctors. She always hurts worse as the weather gets warmer, the fuller her bladder was the better she felt. She couldn’t actively swim, but being in a really cold pool or swimming in the river also relieved the pain a little. But it wasn’t until august of this year when she woke me up around 2 in the morning crying uncontrollably that I knew we had to really start to persist with the doctors. She said it felt like her kidney was slipping out of place. She was terrified. When we told the urologist this he immediately mentioned a floating kidney, but shrugged it off as so rare that couldn’t be it. He placed a stint in the left ureter but that only lasted about 2 weeks. Finally, we are back at MUSC and have more upcoming test to check for movement of that left kidney on Nov. 3rd. I was a little unnerved when the test they ordered had never been done at this university hospital. The radiology department had never heard of it. They are going to do the scan with the nuclear medicine both upright and lying down. Also doing ultrasounds as well. At this point she has been on 3 pain meds and a muscle relaxer; they give her terrible migraines and really not helping the pain very much anymore. She is not sleeping more that 3 or 4 hours in a 24 hour period. She gets chills, shortness of breath, sometimes unable to eat, dizziness, and rapid heart rates. She broke down a few nights ago and told me she thought she was going crazy. Reading all of these posts have given me some hope. If anyone has any updates at all on successful procedures or doctors who have more experience in this please e-mail me dodad426@yahoo.com

    Reply

    • Amanda Corbin
      Apr 23, 2016 @ 12:47:53

      Wow… Nicole, Reading your Post seems like a LIFETIME Ago and it’s only been 6 Months!!
      Continued Prayers for Mini NiNja and Speedy Recovery from her own personal hell… 😘

      Reply

  24. Laura Rosier
    Jul 25, 2016 @ 13:56:44

    I am pretty sure this is what I have. Does anyone know of a doctor in the Atlanta area? I have had a sonogram, a CT scan, bloodwork and have seen two Nephrologists and they see nothing. They are ignoring my main symptom which is horrible pain on my left side when I get out of bed in the mornings. I can hardly breathe and it takes a couple of hours to stop hurting and then I am drained for another few hours. I feel something move inside me sometimes. I am usually OK when I am lying down.

    Reply

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