Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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My first scraping and denervation is scheduled

On Sept 27th I am having my left kidney scraped (at least 100 cysts) and it will also be denerved.

Recovery time is 3 to 6 weeks.

I would appreciate your thoughts and prayers.

Man I hope this gives me some relief.

Larry

Replies

norma67
norma67

Oh Larry, I hope this helps you, please keep us all informed.

Lots of love,
Norma.... and I really mean that!
jennyd36
jennyd36

So will they actually open you up to scrape or will they insert a needle to drain them?
LPenrod
LPenrod

There will be 4 small holes. It will be done laparoscopically.

The fluid is collected and removed. I doubt they are drained, but I really don't know.
LPenrod
LPenrod

I think they literally rupture as many cysts as they can get to robotically and remove a part of the cyst wall so that the cyst is unable to reclose. Then they remove the fluid from the cysts as it collects in the abdomen. A drain tube is left in for a while to collect the fluid that weeps out from the cysts and the surgery.

It is supposed to be quite painful for a few days and approximately 2/3's gain some relief for 1-2 years.
jennyd36
jennyd36

thank you for the info. I read 85-90% found immediate relief and 62-67% found pain relief after 2 years.

http://www.medifocushealth.com/NK012/Treatment-Options-for-Polycystic-Kidney-Disease_Management-of-Renal-Symptoms-print.php

So curious how this works for you as they are looking at these procedures and/or possible early transplant due to severe pain not controlled. Please keep us updated and I hope you find relief.
deleted_user
deleted_user

hope it goes well and you won't be in pain after it heals.
be sure to update us because many others may benefit from your experience.
LHanley
LHanley

Where are you having the procedure? I ask because my neph says 'deroofing' cysts is a tricky surgery and you don't want just anyone doing it. He sends his patients from Florida to Brigham Women's - quite a distance - to be sure they get the best care. I hope knowing relief is coming makes the next month fly by!!
Lisa H
LPenrod
LPenrod

KU Med Center
David Duchene

http://www2.kumc.edu/urology/faculty_duchene.asp
LHanley
LHanley

That's interesting. I didn't know that urologists did the surgery. Anybody else have this procedure done?
LPenrod
LPenrod

I had approached another surgeon that I used for gastric bypass and my wife used for taking her gallbladder out. He is also a trauma surgeon. I asked him if when it was time, would he remove my kidneys. He told me that kidneys are the sole domain of Urologists. He said any time he is working on putting someone back together (trauma) if there is kidney work, he has to call in a urologist.
deleted_user
deleted_user

I think I wrote about this earlier, so I'm sorry if I'm repeating myself, but I did have this done four times. Each time the same urologist performed the surgery. I was in the hospital for about four days each time. I had relief from pain for close to a year.

I hope you find relief and it works for you.
deleted_user
deleted_user

There is no update! I want to know how you are??
deleted_user
deleted_user

First good luck Larry with this procedure. I posted something similar on 1/18 as my Neph is also recomending something similar and the only reply I got was from someone now blocked. I am wondering if anyone has had this done and what were your results, etc. Always apprehensive about surgery, infections, etc. with PKD.
Thanx
deleted_user
deleted_user

I had my left side done once and it was by a urologist as well. I had pain relief for about 11 months. Sadly, everything is right back to "normal."