Deroofing of cyst

[Venu4584]

Hi. I am 37 and diagnosed with ADPKD. Is there anyone here who got deroofing of cyst ?

[123432]

Hi thereI have had the procedure twice. If you have any questions happy to answer

[Venu4584 in reply to 123432]

After deroofing of cyst , cyst developed again or not

[Blusphynx]

I had the procedure three years ago, deroofing of largest liver cyst as the bulge on my right abdomen was weighing me down literally.So relieved after it was done , short hospital stay and some care after but eventually other cysts may enlarge and need deroofing.

[123springtime]

Hello I have had procedure done twice also so I would be happy to answer any questions! I can only answer from my personal experience and you will have your own as we all have different size kidneys and different amount of cysts.

Both my procedures done two years apart took more than few hours under anaesthetic. My kidneys were both huge with innumerable cysts. Don’t underestimate the operation it does come with a recovery time of 4 weeks. It is painful at first like any other op but you do and will recover. I would honestly say I had 5 years worth of relief from my pain. Was it worth it - yes it gave me relief more than just draining cysts with local needle. But for me my cysts grew back and kidneys still increased in size over time. They did say that might happen. I’m sure for someone with smaller kidneys with smaller amount of cysts the op would probably be more beneficial if say some were in a particular painful place. Everyone is different and in different levels of pain and it depends on how it’s affecting your daily life. I went ahead as I wanted to do anything to help myself. Unfortunately they have not offered surgery to me again. I still have normal function thank god. I hope I have helped and not scared you I’ve been honest. But any other questions please ask xx 😊

[123432]

I echo 123springtimes response my experience was the same. For me it was partly successful they were able to defroof a few of the smaller cysts however the main large one they could not access as it was underneath they tried on two occasions now have told me they can’t reach that one at all. My liver and kidneys are huge too. But on a day to day basis I lead a normal life.

The recovery is 4 weeks my top tip would be to avoid pain killers as much as possible and use hot water bottle and rest I recovered a lot quicker when I used that approach.

[Bluenose1812]

My daughter has ADPKD with some cysts in her kidneys but very bad ones in her liver. She had deroofing and resection of her liver but it only helped for about 12 months and she ended up having a liver transplant 15 months ago. She is now completely symptomless but of course immuno-supressed. My eGRF has been abnormal for the last 6 months so I am having a kidney ultrasound in 2 weeks to see if I am carrying the mutation. So the short answer is deroofing can help but the outcomes are as varied as our own genetic makeup.

[RonZone]

Hi all, just found this topic. I'm not familiar with "deroofing". My Nephrologist has never mentioned having that done. I will start dialysis in the Spring. Is there a possibility I would have to have deroofing done even after starting dialysis?

[PeaB4YouGo]

ncbi.nlm.nih.gov/pmc/articl... seems to be a definitive article on Decortication, as the professionals call it. It's a dense read, but it has some good explanations of what it can, and cannot, achieve. Apparently, it's good for pain relief but does nothing for kidney function or disease progression.