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Old 09-01-2012, 02:34 PM   #1
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Perc Neph (PCNL) Procedure For Kidney Stones??

Hi folks. I'm wondering if anyone has been through Percutaneous Nephrolithotomy (Perc Neph or PCNL) for kidney stone removal and could share their experiences.

I have a 1.3 cm kidney stone, too large to pass. I'm told the commonly used Lithotripsy shock wave treatment is not a good option for me. I am on blood thinners for a clotting disorder and cannot go off them for any length of time. So the minimal bleeding that comes with Lithotripsy could be much worse in my case. And I'm told that often two or three procedures are required.

My urologist has suggested that I have the Perc Neph procedure instead, where they go through the back and directly into the kidney to break up and retrieve the stones. I've been reading about it and it's certainly more invasive than shock waves and apparently has it's risks. Has anyone been through it? Would appreciate your input. How successful was it? How painful? Complications? Hospital time? Anything you have to share is appreciated. Thanks!

 
Old 09-26-2012, 08:09 AM   #2
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Re: Perc Neph (PCNL) Procedure For Kidney Stones??

Quote:
Originally Posted by AuntNanc View Post
Hi folks. I'm wondering if anyone has been through Percutaneous Nephrolithotomy (Perc Neph or PCNL) for kidney stone removal and could share their experiences.

I have a 1.3 cm kidney stone, too large to pass. I'm told the commonly used Lithotripsy shock wave treatment is not a good option for me. I am on blood thinners for a clotting disorder and cannot go off them for any length of time. So the minimal bleeding that comes with Lithotripsy could be much worse in my case. And I'm told that often two or three procedures are required.

My urologist has suggested that I have the Perc Neph procedure instead, where they go through the back and directly into the kidney to break up and retrieve the stones. I've been reading about it and it's certainly more invasive than shock waves and apparently has it's risks. Has anyone been through it? Would appreciate your input. How successful was it? How painful? Complications? Hospital time? Anything you have to share is appreciated. Thanks!
Hi AuntNanc - I,too have a stone too big to pass (basically the size of the kidney itself) and lithotripsy is not an option for me either. How are you doing? Have you had the procedure yet? I don't see my dr until October 9th to decide what can be done. I just wondered if you have anymore information. Thanks

 
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Old 09-26-2012, 09:03 PM   #3
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Re: Perc Neph (PCNL) Procedure For Kidney Stones??

Hi stoneyburke. Wish I had information to pass on. I've been waiting all this time for a referral to a specialist and just got my appointment yesterday. I live in central PA and am driving almost three hours to see a doctor at Hershey Medical Center. Here's the good part. My appointment is October 9, too! Guess we can share information afterwards. There is information about the procedure on line if you do a search. I even found a video of a simulated procedure. The full name is Percutaneous Nephrolithotomy. Good luck with your appointment.

 
Old 09-27-2012, 06:23 AM   #4
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Re: Perc Neph (PCNL) Procedure For Kidney Stones??

AuntNanc - sorry to hear you haven't had your procedure. Are you in a lot of pain? That is the weird thing for me. I have absolutely no pain at all. It was a fluke that my family dr even found out about this monster stone. (I had 3 stones for years that couldnt be blasted. When I asked my old urologist what could be done to get rid of them, he had said we'd just keep an eye on them but to get rid of them would be complicated. So I would see him every 6 months to say the stones were still there. Finally after a year I quit going to him. I had no idea they would grow! Now the three have grown into one huge stone) So for me the wait is just a pain in the butt because I just want it over. I feel for you if you have been in pain all this time :-( I have to go to Indianapolis which is almost three hours away so we have that in common too. I just hope when I finally do see the dr that he will do the procedure soon after my appointment. I don't want this to drag into the holidays if it can be helped. Well keep me posted about your appointment and I will do the same. Good luck to you.

 
Old 09-27-2012, 08:25 PM   #5
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Re: Perc Neph (PCNL) Procedure For Kidney Stones??

Actually, I don't have a lot of pain either. They were first discovered two years ago when I was in a car accident and had to have CT scans. They told me while I was in the hospital what the scan showed and suggested I bring it to my PCP's attention. When I did, she seemed to think I should leave them alone if they weren't bothering me. Over the past several months, I've started having lower back pain and hip pain. I'd forgotten about the stones and assumed I was getting arthritis in my hips and back. Then a few months ago, I began seeing an occasional pink tinge to my urine and the back pain would be accompanied by some cramping. So we did another CT scan and found this one stone had really grown. The doctor said, because it's too big to pass, it's not getting stuck, just floating around in there and causing pain, depending on which way my body position sends it next. All very scientific! I wish now we'd done something about it when they first saw them. But I was dealing with other injuries then and kidney stones were low on the priority list. I'm hoping to get mine done before the end of the year, too. My insurance deductible is met for this year. If I have to wait till next year, I'll be paying a hefty share of the bill. Besides, I'm like you. I just want to get it over with. One less thing to worry about. My appointment is 8:45 a.m., so will be getting up pretty early! I'd like to ask the doctor what he was thinking. But I guess I'll just keep quiet and be a good little patient. ;-)

 
Old 09-28-2012, 12:42 PM   #6
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Re: Perc Neph (PCNL) Procedure For Kidney Stones??

Good Lord - you will have to get up in the middle of the night to make your appointment!! Mine isn't until 10:30 so a little better for me I would like to ask my dr if he seriously couldnt see me sooner than 9 1/2 weeks from when my dr called to make the appointment :-( You are definitely right about insurance....sure would be nice to get it in this year! I am going to stop taking my celebrex on Monday. I read somewhere that you have to be off that and any other anti-inflamatory meds 7-10 days before surgery. Hoping to get surgery scheduled even quicker doing this. I am probably dreaming, but worth a shot. Sure won't be pleasant to be without my celebrex though. I am so glad that I came to this sight. It helps having someone to talk to that is going thru the same thing. The old adage misery loves company right? Here's hoping your stone continues to cooperate and not give you any pain until you see your dr.

 
Old 09-30-2012, 09:51 AM   #7
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Re: Perc Neph (PCNL) Procedure For Kidney Stones??

I too am waiting for this surgery, but I am in alot of pain more so at night, it wakes me up and then I go to the bathroom and it hurts until the pain meds start working and I can fall back to sleep, I am worried if it hurts like this now how bad is it going to be after?

 
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Old 09-30-2012, 10:02 AM   #8
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Re: Perc Neph (PCNL) Procedure For Kidney Stones??

Hi Jamie5538

Sorry to hear you are in so much pain. Do you have one large stone or several? Is your procedure scheduled yet? Have you had this issue a while? Hoping you get your procedure soon. From what I read, it's not going to be a picnic by any means, but worth it in the long run right? Keep us posted on what's happening with you. Good Luck!

 
Old 09-30-2012, 11:45 AM   #9
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Re: Perc Neph (PCNL) Procedure For Kidney Stones??

Thanks, no I havent hear back from them yet,I have one 3mm stone, I have had it for awhile over 1 year. I keep getting infections thats why I need to deal with this soon, so I wait...

 
Old 09-30-2012, 01:04 PM   #10
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Re: Perc Neph (PCNL) Procedure For Kidney Stones??

Those infections are no fun are they? Hope you get relief soon. Hope your dr is closer to you than AuntNance & I. Hope we all have an easy time of it and that soon this will just be a bad memory. Like I said before, keep us posted on whats going on. None of us know what the heck is going to happen, but at least we can support each other. Good Luck

 
Old 10-01-2012, 01:13 AM   #11
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Re: Perc Neph (PCNL) Procedure For Kidney Stones??

Hi Jamie5538. Welcome to the waiting club. As stoneyburke said, there is some pain involved after the procedure. But it should be short term and, since they remove the stone or stones during the procedure, you shouldn't have any more pain once you've recovered from the procedure itself. If you don't mind my asking, since 3mm (or did you mean cm?) is a relatively small stone, is there a health issue that prevents you from having the Lithotripsy procedure where they use shock waves to break up the stones so you can pass them naturally? I would gladly go that route if I could since it's far less invasive. But, I'm on a blood thinning med and the risk of bleeding increases as a result. Sorry you're having so much pain with yours. I think mine is just too large to block anything and cause the pain you're having. I have some pain. But it's minimal. Wishing you the best with your procedure. Come on back and let us know how you're doing.

 
Old 10-08-2012, 08:26 AM   #12
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Re: Perc Neph (PCNL) Procedure For Kidney Stones??

Hi AuntNanc

Just wanted to wish you good luck with your appointment tomorrow. Hope you get good news and get your surgery scheduled soon (if you are anything like me, you just want to get it over with!) Please let me know how you turn out and I will do the same. Things have changed a little for me - my husband found out he had a cyst between his 4th & 5th vertebrae and is scheduled for surgery on Nov 9th so will probably have to delay my surgery until the beginning of the year. Will just have to wait and see what the dr says. Anyway have a safe trip and good luck!

 
Old 10-08-2012, 08:30 AM   #13
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Re: Perc Neph (PCNL) Procedure For Kidney Stones??

Hi Jamie5538

Just wondered how things were going for you. Did you get in to see the dr yet? How is your pain? Hoping you are doing better. Please keep us posted.

 
Old 10-08-2012, 08:34 AM   #14
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Re: Perc Neph (PCNL) Procedure For Kidney Stones??

sorry 3cm Too big to pass and it's in what they call "the meat" of the kidney so this is the only way to do it, I have been told this by my urologist and I know if there was another way she would do it and not send me 2.5 hours away, I havent heard from the hospital yet, still waiting, she thinks it would be a good idea to put me on a low dose antibiotic till the surgery so I don't get another infection, right now I'm on #5 this one is for a lymthnode infection in my neck, it sucks I am 34 years old and a mother of three 2,8,14 and my husband works long hours so when I'm down and out (sick) it's hard on the whole family. I like reading about others so I don't feel so alone in this. Thank you for writing to me!!!

 
Old 10-08-2012, 11:18 AM   #15
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Re: Perc Neph (PCNL) Procedure For Kidney Stones??

Oh Jamie you poor thing! Cannot imagine dealing with a large stone with children that young. Do you have family around that can help you? You will definitely need help - especially after your surgery. I think your dr is wise to keep you on a low dose of antibiotics. Wish I would have thought of that. Are you still having issues with pain? Hope it is more manageable for you now. Will keep my fingers cross that you hear from the hospital soon and get this taken care of. Good luck Jamie!!

 
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