PCNL Surgery

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I was diagnosed with a 4 cm staghorn kidney stone after having a CT scan for adominal pain and referred to the urologist. The doctor explained that PCNL was the only option to remove the stone before it damaged the rest of my left kidney. I scheduled the surgery for Nov 11th and everything went well the day of surgery. The tube was inserted 2 hours prior to my surgery by Intervening Radiology and I only felt mild discomfort. Surgery went well and all but sand size granules of the stone were removed. The pain meds worked fine until the middle of the night. The pain became excruciating and the nightime nurse was ot very responsive. I had to wait anywhere from 2 hours to 5 hours for the nurse to give me the pain pills. I opted to be discharged the day after to surgery due to such poor care at the hospital. My first few nights home were extremely uncomfortable and the pain was horrible when I would lay down or recline. I requested additional pain meds and to take them every 6 hours versus 8 hours and this seemed to get the pain under control. I was starting to feel better when the day came to get the nephrostomy tube removed. One week after surgery, I went back to the hospital and within 15 minutes the nephrostogram and tube removal was complete. It was a little uncomfortable, but not painful. They bandaged me up and gave me a care package with a handful of gauze pads and tegaderm film. I'm not sure what they thought this would accomplish. I used up the whole care package within a few hours and ended up with what felt like diaper rash on my back. The urine leakage was uncontrollable from my back. I soaked at least three loads of laundry before my husband was able to get home with bladder control pads and ACE bandages to improvise a urine control bandage for my back. Here I am 39 hours post tube removal and still changing pads on my back every 2-3 hours. Doc says this is normal, but it doesn't feel normal to function with a pad on your back! I'm thankful my job gave me advanced sick leave and I can stay home until this dries up. I'm also still feeling the same amount of pain I have been for the past week. I'm glad many others haven't had as rough a time with PCNL, but I wish I had been more prepared for the difficulties I've endured with the post surgery recovery.

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5 Replies

  • Posted

    Hi Julie,

    Someone recommended puppy pee pads to me to put behind me wherever i was sitting and i think this was a great idea.

    Probably because the tube was in for so long it will take a while to heal and close up.

    i had the same experience with pain the night after surgery from 10pm - midnight just excruciating pain.

    i stayed in the day surgery place overnight not the main hospital which was next door. all the nurses overnight were great i have to say probably because there were only a few people there. the car ride home for me was the worst pain ever and i needed pain meds for about 6 days.

    It will get better! Rest and recuperate and the good news is you will feel better to enjoy the holidays.

    My surgery was October 7th and I was lucky the tube was taken out next day so i had no leakage it closed right up.

    My stones report came out mixed half oxalate half phosphate which is unusual so i just sent off 24 hour urine test so they cantry to figure out how to help me prevent more stones.

    It seems if you treat 1 it causes the other type to form, ugh!

    Take care,

    Deborah

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  • Posted

    This certainly does not sound normal to me.

    I had PCNL a couple of years ago. I was a complicated case as I have horseshoe kidneys (they are joined together) which meant access to stones was a lot more difficult.

    However surgery was successful. I have not met her but I know of someone who had the same consultant as me a few years before me and he did not manage to remove all her stones. He removed all mine thankfully. I was in hospital for a week. Catheter for 3 days and a stent for a week. A couple of episodes of really bad stomach ache that week. They tried taking stent out after 3 days to see if I could manage without it but I was leaking badly so they put it back in again.

    Sorry you are having these problems.

    Take care and keep in touch.

    Sarah

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    • Posted

      Hi Sarah,

      Thank you for sharing your experience. I think the lengthy recovery may be due to the difficulty the doctor had in getting my stone out. He had to dilate the kidney more than he prefers since the stone was embedded in scar tissue and reached the far upper end of my kidney. The tube also had to be routed from the lower part of my kidney. The leakage finally stopped in the middle of last night and I'm feeling much better today. I'm only feeling a little twinge of pain occasionally in the kidney and some fatigue, but I'm relieved to have my recovery progressing now.

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  • Posted

    O gosh! I feel such empathy for you. When I had my first one done I was upset that nobody had offered this procedure first. Compared to all the pain and stints and long months of suffering I endured before mine...it seemed like a breeze.(please note..I know it wasnt). I recovered pretty easily not much drainage..or overbearing pain. I certainly hope you are feeling better with each passing hour. If you feel you are not haling right you must advocate for yourself..for who knows your body better. Good luck and drink lots of water.

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