Nephroptosis, Yes, it IS a Thing

So, I’ve been hearing about people who are seeing doctors that either think they are imagining the pain they are in, that they are seeking attention, or that they really don’t need to be helped.  It makes me sad and it makes me angry.

We got lucky.  We accidentally got an appointment with a different urologist in the practice my daughter was going to when she was in extreme pain.  Her usual one was writing it off as kidney stones passing (the pain) and told her to just lay down and suffer through it.  Trouble was, she was suffering through it for days and days and days.  We had to take a puke bowl with us no matter where we went.  She had to lay  down on the back seat of the car because sitting up made her puke and almost pass out from the pain.  In frustration, I called the doctor to be seen.

She was seen and the doctor (her “regular” was out town) who saw her TALKED to her and LISTENED to the answers.  He said he thought he knew what was wrong and sent her for tests.  He was right, and she was diagnosed with Nephrotposis.  Most doctors have to google it, or sound it out and guess the meaning.  We got lucky.  She was seen and it was diagnosed and she got surgery and she is now pain-free (well, until she actually DOES pass a stone and that is short lived).

Nephroptosis is one of those things that you don’t hear about.  It is pretty rare.  But it IS a thing!!!

While I don’t encourage anyone (especially my  daughter) to go googling around for what might be causing the symptoms that she thinks she has, if you landed here you probably already have and have a pretty good idea what is going on in your body.

THESE websites are clinical websites (one is even from the US government) that show it’s real and that surgery usually helps if you are not asymptomatic (and if you were asymptomatic, you sure wouldn’t be at the doctor because you wouldn’t actually… you know… KNOW about it.).

http://emedicine.medscape.com/article/1458935-overview

http://www.jenkinsclinic.org/conditions/kidney-ptosis/

http://www.ncbi.nlm.nih.gov/pubmed/9258063
http://www.ncbi.nlm.nih.gov/pubmed/941371

The last two (from US National Library of Medicine National Institutes of Health) are a bit dated (from the 70s) but let’s face it this isn’t a fancy condition and when you’re not a sexy condition you don’t get a lot of funding or attention.

It is real and we need to let our voices be heard.  They thought I was molly-coddling my daughter until they found out that sometimes what is real is real.

Advertisements

4 Comments (+add yours?)

  1. a corbin
    Feb 28, 2015 @ 11:18:36

    If not for YOU and Your Voice I would not be SCHEDULED FOR SURGERY 😂 Talk About a HAPPY DANCE! Although my story got a little worse After the IVP… My Report (I live in Kansas) said “No Nephroptosis” and I was Destroyed … so I Requested the Actual Scan and I Looked at it. Then I scheduled my Next Appointment in Central TX! YES, Rt Kidney Drops almost Twice the Required Amount for Diagnosis!!! Praise and God Bless TX!

    Reply

    • alicorndreams
      Feb 28, 2015 @ 17:24:21

      I’m so glad you’re scheduled. Wait till you feel better to be doing dances…. but I’m so thrilled that I was able to help.

      Reply

    • Amy
      Oct 05, 2016 @ 02:05:51

      Was this Dr. Bryan Kansas in Austin? I’m in Alabama but think I may need to go to Texas. This has completely taken over my life and doctors can find nothing wrong. I’ve been to too many to count. I just stumbled upon Nephroptosis and can’t believe the symptoms! I HAVE to find out if this is what I have. I am in almost constant pain and the only relief is when I lie down. MANY MANY THANKS.

      Reply

      • alicorndreams
        Oct 05, 2016 @ 03:38:38

        Yes, Dr Kansas in Austin. It’s amazing to find a dr that listens and hears. The change in Amandya that happened just by brig believed that the pain is real was amazing.

        Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: