Nephroptosis and Nephropexy… the continuing story

So… I’ve managed to get my head back above water… I’ve slept a couple times… and I am getting a little more clear headed.  Time to pull together more of the story.

It took way longer than I would have liked to get Amandya into surgery.  In my head I know that they can only schedule surgery when they have openings and when they have doctors scheduled to operate.  But it took two weeks to get her into surgery.  In my mother’s head, that is about 9 years too long… but it is a mommy thing.

I don’t recommend the hospital.  Won’t name names, but the cafeteria was nasty, it took an entire day of not being able to see her post-op for them to get her a room (they were BOOKED SOLID… guess there was a rush on people even though she was scheduled to have to stay over for..well… two weeks) and we weren’t allowed to see her until she was in her room. Once she was in her room, I couldn’t be happier with the way they treated her.

The Nephropexy went well.  Four little holes in her tummy and her kidney was sewn fast to her insides.

Doctor came in to see her, explained that she was lucky it only took 9 months to really determine what was going on, it often takes far longer…. longer while the people with Nephroptosis gain a reputation for being overly dramatic, drug seekers (pain meds), hypochondriacs, attention seekers… because obviously nothing can be wrong… blood tests and normal x-rays don’t show anything and the symptoms don’t really point to anything.  The last patient Dr Geisler treated took THREE YEARS to diagnose.  I can’t imagine having to deal with the kind of pain that Amandya was dealing with for THREE years.  That is obscene.

Now… I have another flag in the air to wave.  This one has fewer followers because this is such a rare condition.

the “cure” isn’t such a complicated matter.

what I need to do is try to find a way to raise awareness.

The nephropexy was a success.  The holes were glued shut.  The kidney felt heavy inside of her where they sewed it fast.  But she is starting to be a semi-normal teenager again and it is wonderful to see.

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30 Comments (+add yours?)

  1. Cathryn
    Nov 29, 2011 @ 11:09:04

    I commented on your first post back in September about this a few minutes ago, but I wanted to tell you that you have given your daughter such an amazing gift by getting this diagnosed an corrected so quickly. If I had gotten help when I was your daughter’s age, I believe many of the auto-immune related issues I suffer from today would have never been an issue for me. It’s nice to know I’m not the only one who is outraged and not okay with what happens to those of us suffering from nephroptosis. How has recovery been for your daughter? Can I ask how long before she felt better? I hope she is doing well and feeling better than ever.

    Reply

  2. alicorndreams
    Nov 29, 2011 @ 11:57:09

    =) I think I gave her a bigger gift in just believing her. Even her dad was guilty of thinking she wasn’t really sick but just wanted to get out of school when she didn’t feel like going. I had the same messages for years… I wanted attention… I just didn’t want to … I have RA/Raynauds/Sjorgens and had active RA long enough to get nodules on my knuckles and joint damage… I won’t let anyone suffer just because it isn’t incredibly obvious what is going on. That is stupid. I have insurance for a reason and if something is THAT obviously wrong… it’s there to use.
    She kind of got a reputation for being a hypochondriac when she was SURE for about 2 hours that she had testicular cancer. Her brother is really good at jerking her chain and he had her convinced.
    Nephroptosis has such weird symptoms and it is so ‘rare’ (maybe) that people don’t think about it. We got lucky. She had to see a different urologist when I got her in for an emergency appt or she may still not have gotten diagnosed.
    She had surgery (4 little holes in her tummy) and is doing much better. 2… maybe 3 months for the swelling to go down from the surgery… and the blood in her urine from her surgery (known side effect) and most days she is good. Now we are working on finding out why she has a dozen kidney stones, proteinuria and high uric acid. She felt “better” after the operation pain went down (a week) and is finally nearly back to her ‘old’ self… she is practicing now to do athletic team in ROTC this weekend… fingers crossed best they can…
    Hugs, Cathryn. I’m trying to figure out how to get the word out on nephroptosis now… it’s one of my many flags to wave!!!

    Reply

  3. Carla
    Jan 08, 2012 @ 13:13:48

    Hello,
    You do not know me, I came across your blog from a search engine.
    The thing is, I have nephroptosis myself and the doctors have not agreed yet on whether to do surgery or not (they took a year to diagnose me, they wouldn’t believe me either at first). I would like to ask, how is your daughter doing? I take it that it was a laparoscopic surgery?
    If you could please reply, I’d be very grateful, I cannot deal with the pain any longer and I used to be an athlete. Now in my early twenties, whenever I am not studying, I am in bed or in the sofa because of the pain.
    Sorry about any mistakes, English is not my native language.
    Thank you very much.

    Reply

    • alicorndreams
      Jan 08, 2012 @ 13:40:30

      Hello Carla. Your English is perfectly fine. Better than some people who do speak it natively. Relax.

      Amandya was “lucky”. Hers took about 8 months to diagnose and I actually lucked into her diagnosis. She was supposed to go see her “regular” urologist and he was in surgery the day I got angry and forced them to take her. The guy she went to see had seen it before otherwise she may still not have been diagnosed!

      You sound EXACTLY like Amandya. She was athletic and thin (which is apparently the classic patient… between 15 and 25, thin, female, athletic) and she ALWAYS laid down because that is the only time it didn’t hurt: when the tubes connected to the kidney relaxed and it fell back into its normal position.

      Yes, her surgery was laparoscopic. She has four tiny scars the size of a pencil eraser. The surgery took about an hour, maybe an hour and a half. She is fantastic now. No more kidney pain. The scars should fade away in a couple years. It was scary for her, thinking of having surgery and it being on her kidney and everything, but she was in the hospital over night and was off school for two weeks (although she wanted to go back in about a week because she was bored).

      MAKE them listen to you. Apparently it is common for doctors to assume that nephroptic kidney patients (before they are diagnosed) are hunting pain meds or that they are hunting attention. The IVP x-ray (it apparently has to be with a deep breath in and then with a deep breath out) showed VERY clearly the kidney moving a huge amount in her abdomen.

      Good luck and don’t hesitate to ask anything. There is SO not enough information on this.

      Reply

  4. Carla
    Jan 09, 2012 @ 06:51:31

    Thank you so much!

    Yes, that is the case with me, today I had to see an urologist and he said I should wait 6 months. No. Way.

    I am trying to contact another urologist that was willing to take me seriously but had a long waiting list, maybe I can get to see him.

    I really want to thank you for having helped me, you put me at ease regarding the operation. I will let you know when this gets fixed.

    If I can be of help in any way, please let me know.

    A big hug your way and thanks for doing what you do,
    Carla

    Reply

  5. Carla
    Jan 09, 2012 @ 06:56:37

    Sorry, I forgot to ask:
    Is she back on sports yet or does she need more time to recover before that?
    Thank you.

    Reply

  6. Kim Long
    Jul 10, 2012 @ 09:07:59

    Hello,
    I am also having a very hard time finding a doctor to help treat me. I have been diagnosed with nephroptosis but I have seen 2 urologists who told my everyones kidneys move, and the 3rd said I definitively have nephroptosis but could not be sure that it was the cause of my pain. I have had more tests than most people have in a lifetime. Since I have seen a gastroenterologist and my gynecologist and they have ruled out any problems in those areas my urologist said I would have to go to an orthopedic surgeon to rule out back problems. I saw him this morning and althoug the xrays came back perfectly fine he said I would need an epidural to completely rule out my back. I cannot believe I have to have another test!!! Can you please tell me the name of the doctor that fixed your daughter and where he practices. I am desperate for help. This is the most frustrating, depressing, and time consuming thing ever!
    Thanks so much for any help you can give me,
    Kim Long

    Reply

  7. Willma
    Jan 12, 2013 @ 22:21:06

    Hey did any of you or the people you know have blood in their urine before the surgery as in due to the nephroptosis itself?

    Reply

    • alicorndreams
      Jan 13, 2013 @ 16:24:06

      No one that I know of, but then I don’t know that many people who aren’t on here.
      Amandya didn’t have blood in her urine then, but right now she does. I think she’s passing one of her stones, but that is only a hunch… talk to your doctor

      Reply

  8. Kristy Bliss
    Oct 01, 2013 @ 14:14:15

    Hello, How is your daughter now? Does she still feel the heaviness from the fixing of her kidneys?

    I am sure I have this and need the surgery. Skinny, white, female, athletic to a fault…drove trucks for awhile, ’till this made me stop. Dragging pain that seems to get worse over time, especially after being in a vehicle or doing anything strenuous. Relief upon reclining. Does insurance typically cover nephropexy? I share your desire to get the word out on this, because I too happened upon the information that indicated nephroptosis much delayed because of ignorance about this. I do not know why the condition is so persecuted. Maybe it was too common a diagnosis historically and so had a backlash. I don’t know.

    Maybe the only people who believe are those who can fix it. How do I find them? Who are the best doctors for this? Has anyone had the surgery in Russia? ($800 instead of $25,000) What are the best types of fixing, the velcro type/sling or stitching inside? Could you please tell me any leads you have on this info? I cannot believe what I found in the Journals of Urology that is not circulated among the general medical practitioners. No wonder. A subscription is $900 per year?! I have no insurance at this time. I really want to be able to work again! I still have my health otherwise, but can hardly do anything with my kidneys hurting so much all the time. What is the best way forward for someone with Nephroptosis? PLEASE HELP! THANK YOU!

    Reply

    • alicorndreams
      Oct 01, 2013 @ 17:51:38

      Amandya is much better now. MUCH better. She still has bouts of pain with kidney stones, but that wasn’t connected, that we can tell, with the nephroptic kidney. She says she sometimes feels where it is stitched, but nothing like what it was before. She even did the half marathon with me last spring (and left me in the dust!).
      Insurance covered the Nephropexy, in fact it was done as an outpatient surgery, but she was then admitted because the insurance insisted that she spend the night in the hospital after the surgery. Which is good because she puked for hours after the anesthesia wore off. She had it done with a robotic assisted surgery… three tiny holes in her stomach and the kidney was stitched to the abdomen wall. I know different doctors opt for different types of surgery… but Amandya has done well with this one.
      How do you find the doctors who can fix it? Call and talk to Urologists. I literally lucked into finding ours (Dr Kansas in Austin Tx) because he was at a conference and heard about it when he had a patient with those symptoms. I don’t know how to find the people who know people who know people. The test that they did to diagnose her was an X-Ray of her standing up and laying down. I saw the x-rays. You could see how much the kidney fell into her pelvis when she stood up.
      I don’t know anything about Russian surgery. I’m not sure if you have to have a diagnosis to qualify to go and get it done or not. Or how long you would have to be in country to have the surgery there.
      I know that Dr Kansas said that it is under diagnosed because youngish women have a reputation (as a group, I guess) of wanting attention or wanting drugs and will say anything to get that attention. The woman who was his first patient was a NURSE and couldn’t get anyone to take her seriously and HE had to investigate for a year before he stumbled on what it might be.
      I would say find a Urologist who you can talk to who will listen to you. Talk to him. Explain to him what you have seen, what you have read. He has to have contacts in the industry who he can talk to to verify what you believe to be true, who can help him to help you. And he probably can help you to try to find a way to pay for the tests and surgery. Within days of the surgery, you will likely start to feel enough better to be able to seriously think about going back to work.

      Reply

    • Kim Long
      Oct 01, 2013 @ 17:58:22

      Hello Kristy! My name is Kim and it will be one year next month that I had my nephropexy. It took two years of doctors, tests, a gall bladder removal, and simply disbelief of my problems from most of the medical professionals that I encountered before I found a doctor who actually agreed to do the procedure. He had never done it before, as you would find it very difficult to find any doctor who has. But he was kind, considerate, and saw all my medical records and all that I had been through. The surgery was a cinch for the most part. He used the DaVinci robot and made four incisions and just stitched the kidney to my back wall muscle. After about two weeks of recovery I noticed one day that I had actually not had any pain all day long. It seems that every now and then I may have a little twinge but it never lasts long and is usually few and far between. I consider myself cured from the daily agony and pain of this condition. The definitive test to see if your kidney is actually dropping is an IVP prone and upright. Mine kidney didn’t just drop by also twisted a little bit. My doctor explained that the pain is mostly coming from the ureter being pinched when the kidney drops too far. It impedes the flow of urine into the bladder, which is the same thing that causes the pain from a kidney stone. It is not the stone itself actually but the stop of flow that it causes. The only salvation for us is that we can get into a prone position and open the flow back up. but it sure is hard to live life lying down.

      I live in Alabama, but I did ask my doctor if I ever came across anyone who was searching for a doctor to help them would he mind if I gave them his information and he said sure. The procedure was covered by my insurance program less my usual hospital/surgical copays and deductibles. If you want any information from me just reply and I would be happy to tell you anything I can and if nothing else encourage you to keep up the fight. You are not crazy, you have a real condition, and it is treatable. Good luck!

      Kim

      Reply

  9. Kristy
    Jun 11, 2014 @ 11:57:34

    Thank you, Kim. I am still searching for a doctor to talk with me about this and order the test. I feel that the condition is effecting my will and finding it difficult to get the help I need. I wonder if it is too late for me. Nobody believes me. Doctors and friends all derail me from nephropexy. I don’t get it. I am not sure I can find help. It is so strange.

    Reply

  10. Kristy
    Jun 11, 2014 @ 11:59:56

    Thank you Alicorndreams. I appreciate the advice and encouragement. Your stories are an oasis in a dessert of having an unfamiliar condition. I am trying to find a doctor who will talk about nephroptosis. I keep trying. Maybe a nephrologist?

    Reply

    • alicorndreams
      Jun 11, 2014 @ 16:53:12

      Amandya just had a regular urologist. Dr Kansas in Austin Texas understands and knows. He told Amandya that doctors still think women are hysterical and looking for attention. It’s NOT too late. Don’t stop fighting. It is so frustrating to me because we just lucked into finding the doctor we had, and it was PURELY an accident (her regular urologist was on vacation) that we ended up with who we ended up with. You are NOT crazy (well… if you are like me… you might be a little on the loony side… but NOT because of your pain. it is real) and I know that doctors thought she was just seeking attention. It’s ridiculous. They are DOCTORs for heavens sake.

      Reply

  11. deborah
    Nov 02, 2014 @ 10:47:40

    I have just had a nephropexy three weeks ago still feeling very tired and some pain.
    Thought I would have been ok by now.

    Reply

    • alicorndreams
      Nov 04, 2014 @ 06:25:09

      pain like it was? or healing pain from the surgery?
      make sure you talk to your doctor… really talk to him.

      Reply

  12. Madeline
    Jan 05, 2015 @ 12:42:46

    I was recently diagnosed with dropped kidney and will have Davinci surgery in about a month. I had had an appendectomy about 10 months ago and so I thought the funny pain under my right ribs must have been something related to that. Then I noticed this lump just below my ribs on my right side. It would be gone in the early morning and then get bigger as the day went on. When I told the doctor about it, she examined me lying down, so she could not feel it. After a few weeks, I went back and showed her how it would move around when I was standing up and then disappear when I lay down. She sent me for an ultrasound which showed that the lump (about the size of a baseball) was my kidney and it was hydronephrotic, meaning that it was swollen and not draining. Suddenly, it became an urgent matter. They did a CT scan and it showed the swelling but not the ptosis – the scan was done while I was lying down. The urologist did let me show him how my kidney would move around in my abdomen in when I assumed different positions, (it would even go over to the left side below my bellybutton!) and, after ordering a renal scan, he scheduled me for surgery. I guess they only do the surgery if your kidney is not functioning well. My renal scan showed marked reduction in function.
    I also am fairly thin and athletic. I am not in a lot of pain but past experience indicates that I have a high tolerance.

    Reply

    • alicorndreams
      Jan 06, 2015 @ 04:43:28

      :/ having a high pain tolerance is sometimes a blessing… sometimes not so much.

      They only do surgery if they actually believe you. I’m a barracuda mom… I made them listen.

      Reply

  13. Madeline
    Jan 11, 2015 @ 13:30:34

    I wonder if it would be helpful for Kristy to go to a younger urologist. I’ve been reading about this condition and apparently there has been quite a bit of controversy in the past. Here’s a link to an article I found. It’s sort of technical but it seems like there is a whole generation of doctors who thought nephropexy was mostly unnecessary and that women who complained of symptoms were hysterical. They’ve only just started doing that surgery again recently, and it’s the younger docs who are trained in the procedure. My first urologist had the integrity to refer me to a younger guy in his practice. Here’s the link in case anyone’s interested: http://www.sciencedirect.com/science/article/pii/S0022534701642964

    Reply

  14. Juniper
    Feb 27, 2015 @ 14:07:34

    I have been dealing with this problem for about a year and a half. I’ve had multiple X-rays, CT scans, MRIs, ultrasound, and renal scans. I even had an exploratory laparoscopy where they found some ovarian cysts and endometriosis. The problem is that all of my labs are normal and all of my scans were done lying down. I finally saw a urologist in December who I was referred to because one of my urine tests showed blood and on the renal scan they noticed my kidney was swollen. They kept me in the hospital for 4 days on IV antibiotics, positive that it was a kidney infection. Finally the urologist told me about nephroptosis. He wasn’t really familiar with it but had heard of it. It took a month to schedule a renal scan and ultrasound to confirm. Of course, both were done lying down! I asked the ultrasound technician to please check my kidney when I stood up. He was shocked to find that it had moved nearly 3 inches. When the urologist got the report, there was no mention of my kidney moving! Fortunately he believed me. He sent me to see a kidney transplant specialist in another city, over an hour away. My referral specifically stated that I was being sent for a surgery consult for a nephropexy. When I went to see the surgeon yesterday, he told me he hasn’t done a nephropexy in over 10 years for 2 reasons. One, because a floating kidney is rare, and two, because a floating kidney is just an inconvenience, a nuisance, not something that requires a surgery. He said that years ago they believed it helped but now they know better. According to him, nephroptosis does not cause pain or problems and nephropexy is a placebo, people feel better because they believe they’ve been cured. He said the pain I’m feeling is most likely back pain or fibromyalgia. I had back surgery in 2010 and spent over a year in bed. I know back pain, this is not back pain! Besides, all the scans showed my thoracic vertebrae look great. I was diagnosed in 2011 with fibromyalgia simply because I felt pain when the doctor touched certain pressure points. I have never taken medication for it. He is sending me for another renal scan, this time sitting up. If it shows decreased renal output, he’ll agree to do the surgery. If not, he wants me to accept that nephroptosis doesn’t cause problems. They can do the scan for 2 weeks. Part of me wants to do it, just to prove him wrong, but given his attitude, I think I need to see a different doctor.

    Reply

    • alicorndreams
      Feb 27, 2015 @ 14:23:58

      I would strongly suggest seeing another doctor. I don’t know about anyone else’s experience, but Amandya was gaining and losing the same 15 pounds for months. I watched her puke and puke every time she stood up. It’s real. Dr Kansas suggested that doctors don’t believe women because we are hysterical and want attention but it is very very real.

      Reply

      • K Long
        Feb 27, 2015 @ 21:03:52

        I totally agree! Find a doctor who will listen to you, believe in your problems, and want to fix it. There are doctors out there like that. Took me 4 urologists, among many, many other types of doctors, until I found one who truly wanted to help me. Had my nephropexy 11/06/12 and it changed my life. It was 2 years of testing and doctors who told me I was crazy before that, but I stuck to my guns! Good luck and I hope you find a doctor who really cares!

        Reply

        • Amy
          Oct 05, 2016 @ 01:48:28

          Sorry Kim if you are getting this same comment more than once, I can’t tell if it is sending! I am in Alabama as well and was wondering if I could get the name of your doctor. Many many thanks.

          Reply

        • Amy
          Oct 05, 2016 @ 01:53:26

          Ok now that I see it is working I will post more! I am desperate for an answer to my pain, and nobody can find anything wrong with me. I JUST stumbled upon Nephroptosis and I believe this may finally be the answer. I have had pain since I was a child, but it always came and went. This year it came and STAYED. I have been in almost constant pain for 8 months. It has completely taken over my life. THe only relief is when I lie down. I have been to too many doctors to count, and nobody can find anything wrong. I go from doctor to doctor and everybody sends me away with the same thing: nothing wrong. I am reading the symptoms of Nephroptosis and I can’t believe it. Can I please get the name of the doctor in Alabama who helped you? I am in BIrmingham.

          Reply

          • alicorndreams
            Oct 05, 2016 @ 03:40:02

            I think research on doctors that believe and listen is warranted

            Reply

            • Amy
              Oct 05, 2016 @ 10:19:23

              Thank you alicorndreams! I spoke to Dr. Kansas’ office today. Would love to find someone in Alabama, but I am going to Texas if I can’t. K Long mentioned she finally got diagnosed by someone in Alabama so I was hoping to hear from her!
              Thank you!

              Reply

  15. Juniper
    Feb 27, 2015 @ 14:10:37

    Sorry, CAN’T do the scan for 2 weeks.

    Reply

  16. a corbin
    Mar 17, 2015 @ 17:17:18

    Good Evening!!
    After 6 Long Agonizing Years;
    My Surgery was late in the Day last Thursday. I stayed in the Hospital overnight and returned to our Hotel in Round Rock Friday evening.
    EVERYTHING WAS PERFECT!!
    The car ride back to Kansas was not as bad as I anticipated and By Sunday morning I was resting in my own bed and my recovery is progressing at an Amazing Rate! Life Is Good Again ALL THANKS TO YOU!!!! God Is Good!

    Reply

  17. Alison Banister
    Jan 13, 2016 @ 06:46:35

    My Nephroptosis took 5 long painful years to diagnose. I used to roll around the floor in agony & disbelief by specialists but not family or local doctor. I think the nerves have been damaged.

    Reply

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