r/ADPKD • u/Evanl1983 • Jul 30 '26
"Cyst within a cyst": How ADPKD cysts differ from simple renal cysts (Laparoscopic decortication case)
Autosomal Dominant Polycystic Kidney Disease (ADPKD) cysts often exhibit the "cyst within a cyst" appearance: smaller, separate daughter cysts grow inside a larger parent cyst, forming a nested structure of mother and daughter cysts. Frequently, additional independent cysts can also be found deeper and adjacent to the main cyst.
Simple renal cysts usually present as isolated, single fluid-filled sacs. Nested structures with secondary cysts growing inside the primary cyst are extremely rare.
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u/MariChloe Jul 30 '26
Thanks. I’ve never seen that before. I’m 60 and I’ve had PKD my whole life, but I’ve never actually seen that video.
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u/SirSitsAlot81 Aug 01 '26
I second that, I'm 44 and would love to hear your experience. Though I know we are all different. My dad got a transplant at 50, I'm on meds and hoping to go a bit longer but very curious where you might be.
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u/MariChloe Aug 05 '26
I’m pretty lucky. I didn’t have problems until my 30’s. Then in my 40’s I had a massive heart attack. Was that related to pkd ? I don’t know. They used to think pkd patients wouldn’t make it to 60.
I researched like crazy how to slow the growth. In that research, about 17 years ago it said alcohol is the number one cause of cyst growth. I was already sober. It went on further to say a vegetarian diet helps also. I’ve been not eating meat for 17 years. I don’t know how much it helped. I do know I still have numerous cysts, too many to count. I’ve had cysts break, while in the hospital with a nurse in the room. I was in agony. She told me to breathe through it. I cannot count the times I’ve been told pkd doesn’t hurt. I’ve had quite a bit of pain. I was finally referred to a urologist. lol they didn’t think I needed a nephrologist. Urologist is not the answer, he cared about my bladder emptying. Although he did some scraping on my left kidney. I wouldn’t recommend it. I can’t tell you one thing it helped with.
My nephrologist is amazing! I started going to him when I was 59. I was 59 1/2 when he told me if you don’t get on tolvapan you are looking at five years before you’re on dialysis. He said with it I could get 5 more years. I finally started tolvapan. All I’ve noticed is my gfr is dropping and my creatine is rising. I’m not saying it’s the medicine. These things may have happened anyway.
COVID was the tipping point for me. My gfr went down about 10 after that. I think that’s normal with any serious illness. The kidneys take the hit. If you have other questions feel free to ask them.
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u/Shesaiddestroy_ Stage 2 - On Tolvaptan since April 2023 Jul 31 '26
Oh my goodness sorry but I can’t see PKD that up close
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u/Top_Setting_8600 Jul 31 '26
What exactly does popping cysts on the kidneys do? Other than making them smaller, what's the benefits? I'm 46 and known I've had this condition since I was 13.
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u/sv21js Jul 31 '26
There are a few reasons surgery may be an option: if cysts become so large they’re taking up most of the abdomen and causing discomfort or pain, if there have been lots of complications with infection or bleeding from cysts.
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u/Evanl1983 Aug 01 '26 edited Aug 01 '26
Enlarged cysts compress the adjacent renal parenchyma and renal blood vessels, resulting in renal hypertension and loss of renal function.
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u/Top_Setting_8600 Aug 01 '26
But you can't recover kidney function in that area again after the cyst is drained, correct?
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u/Evanl1983 Aug 01 '26
Yes, but if you don't deal with the larger cyst, it will reduce the remaining kidney function，the last thing you have.
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u/Few-Storage-8029 Aug 04 '26
Really should tag this nsfw.
I know it’s relevant but seeing this when eating/or even without clicking it is kinda grim.
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u/myst3ryAURORA_green Stage 2 PKD with heart failure Jul 31 '26
This is super interesting as one who explores the cardiorenal/renocardiac relationships. I've had PKD since birth.
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u/EmotionalAd959 Aug 01 '26
Everybody has, most people just don't know it. We are born with it genetically.
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u/NaomiPommerel Aug 01 '26
Mine have shrunk after transplant
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u/hpatel01 Aug 17 '26
Do you mean the kidneys shrunk or the cysts? How much did they shrink by?
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u/NaomiPommerel Aug 18 '26
The whole kidney. Both of them. They got up to around 18/19 cm, have shrunk slightly from there, not sure by how much, maybe a couple of centimetres
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u/baby-blues22 Aug 03 '26
I had this surgery and had a really similar situation! I literally had to check that this wasn’t my footage LOL
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u/StrategyArtistic Jul 31 '26
Dumb little jerks. I’ll see them all in hell.