PCNL Surgery...Any advice greatly recieved.

Many thanks for the info.

Think i am having the drainage tube coming out of kidney or so they tell me.

My surgeon has said that if possible they will remove the stone as a whole.

Because of its size he has said that even if they laser it the peices will still be large so would like to try and remove the whole thing.

Ive have stents before when i had stones removed from other kidney.....very unpleasant..!!!!!

Hopefully ill be able to get back to work pretty quickly then.

Many thanks for taking the time to reply.

Hope your stone free now..

​Steph..

Hi John, I know this post was several months ago, but I stumbled onto it by doing a web search for PCNL. I am facing two PCNL procedures to remove a large stone from each kidney. Lucky me, one in each! I have never passed a stone before and never had any procedure at all to remove one. To say I am beyond petrified, especially at the thought of two of these, is a big understatement. I'm 59 and every small/petite build. I'm in okay health otherwise, but I am extremely sensitive to anesthesia, contrast dye, pain meds, etc., not to mention the heavy duty antibiotics. But aside from all of that, I'm just terrified of the whole entire procedure and process. While of course I'm not glad for you that you have had 8 of these, it is reassuring to hear that you have gone through these procedure so many times with relatively little difficulty. I feel very confident in the doctor that will be performing my procedures, and am thankful I found him. He specializes in kidney stones and does PCNLs very frequently. 

His prosposal is to work on one kidney, then I stay in the hospital two days, and he would do the other, I stay another few days and then go home. While I would certainly love to get this mess all out of the way, I'm also fearful of doing what he proposes in case there are God forbid any complications. While I know they would closely monitor me, check my levels, etc., my concern is more about the fact that sometimes things take a little bit to manifest. For example, if one or both of my kidneys suffered any damage from the procedures it might not always be readily evident within a few days. So my concern is if I have both back to back and go home, then what happens if God forbid there is damage to both kidneys. 

I have the option of course of doing one at a time and waiting in between, but I'm really torn as to the best (and safest) way to approach all of this. My kidney doc said it is all entirely up to me and I can even change my mind after the first procedure if I want to wait. 

Anyway, would be so very grateful for any advice and insight and words of encouragement and hope you might be able to offer. I'm having a really hard time with all of this and don't really have any family or friends nearby for support. Thanks so much, Karen 

I don know if you have your procedure yet if you have i hope it all went fine and you are ok,if you havnt hope it all goes well for you as i have no doubt it will. I have total faith in my urologist and his team and no doubt yours will be as good if not better being a stone specialist. Think if it was me i would have both done on same hospital visit but if you dont do well with anasthetics you might need a break inbetween surpose it depends how bad it is for you but im pretty sure it wont be as bad as you think it will be.

Anyway hope it either has or does go well for you please let me kmow how you get on

Best Regards John

HI John, Thanks SO much for getting back to me! I have not yet had the surgeries. As of now it's planned for the first week of June. It is so helpful to hear more about your experience. I just had an ultrasound a few weeks ago, mainly to check and see how my kidneys are looking since I'm waiting until June. Thankfully they look fine and according to the ultrasound everything seems to be flowing properly. So between now and June I will be doing everything I can to get as strong as I can be physically and emotionally to go through this. I keep telling myself, kind of like what you said, that I'll look back when it's all over and it won't be nearly as bad as what I'm thinking. Thanks again! Karen

Thanks so much, John. Yes, I am definitely feeling much better about things thanks to you and others who have chimed in. It has truly been a Godsend that I found this forum and your posts. I cannot begin to describe how grateful I am! I had been scouring the web for months trying to find anyone who had been through PCNL and was not having much luck. I guess that's a good thing because normally when a procedure causes people a lot of problems it will be easy to find someting online

My urologist (kidney stone specialist) told me that most urologists who saw my scans would totally freak out and say I need surgery immediately. Thankfully, because all he deals with are kidney stone removal and management, he does this day in and day out and has performed I think something like 800+ PCNL surgeries, averaging about 3-4 per week. He and another doctor at John's Hopkins are the only two in my tri-state area who actually specialize in kidney stones and perform PCNLs on a regular basis and both are very highly regarded. I'm very fortunate to have found him. Not only is he highly regarded as a physician and surgeon, but he is one ot he nicest, most caring doctors I have ever worked with, period. 

Karen

Thats good to here im really pleased for you. There`s nothing worse than being terrified.Next time you see him ask him what PCNL stands for and if he can spell it 

LOL about the spelling! I actually just sent him this article someone had forwarded to me. It sure made me feel better about my stone situation, and I'm sure it will do the same for everyone here. If this guy can live to tell the tale after having 420 stones removed (in one surgery!!) well, gosh I don't know what to say other than it is truly incredible!!

[b]http://www.dailymail.co.uk/news/peoplesdaily/article-3115516/Chinese-man-420-kidney-stones-removed-tofu[b].html

HI again, Sorry, but I can't seem to figure out how the posting works here so bare with me. I'm scheduled to have 2 PCNLs done in June, spaced 2-3 days apart. So when I called the office to schedule the office manager happened to mention to me that my doc has actually performed simultaneous bilateral PCNL, which means he has taken stones from both kidneys in the same procedure as opposed to having a separate procedure for each kidney. 

I had gone to 4 urologists before ending up with him. He is truly wonderful in every way and the main reason I'm going with him for the surgeries is because he specializes in kidney stones and performs PCNL on a regular basis, typically 3-4 per week, and has done over 800 PCNL to date. All of the other urologists I went to only do PCNL once in a great while and actually told me they were not comfortable doing my PCNL because of the fact I need 2 procedures and also have a bunch of smaller stones. 

So....I was surprised when my doc's office manager mentioned this morning that he has done the simultaenous bilateral PCNL (both kidneys at once) because he had never mentioned that to me as an option. I will of course talk with him about it, but I'm guessing he didn't offer it as an option because perhaps he felt I'm not a good candidate. I'm 59 and in pretty good health overall, so perhaps my age, not sure. 

In the meantime, I decided to look up to see what I could find online. I thought for sure I would find nothing but negative/scary outcomes, but in fact I found the opposite. I read about 3 studies so far that have compared individual PCNL to bi-lateral for cases and in all of the studies the outcomes were very positive for the bi-lateral saying that essentially it did not pose any greater risk. In my lay opinion, I think it is actually less of a risk to do them both at once because the other way I will have to do everything twice, which I would think would be much more taxing on my kidneys and my system overall. Twice under anesthesia within days of each other, twice getting contrast dye, and all of the other stuff that goes along with this. 

Just wondered if you or any others on here had herd of the bi-lateral option for lucky people like me who have large stones in both kidneys. One thing I did notice is that all of the studies were not done in the U.S., which leads me to believe that the medical technology and expertise with PCNL, especially bi-lateral, is more sophisticated than in other parts of the world

Hi John...I know your post is old but I see you've recently been active on this thread. I guess after so many pcnl surgeries that makes you somewhat of a "pro" so I hope you don't mind another panic stricken person asking a few questions.

I'm scheduled for a pcnl on May 18th and have been in complete panic mode for 2 weeks already. Your post was very comforting as I'm scared to death. It seems my surgeon will be following a similar protocol to yours. Although my surgeon did agree to discharge me the next day with the drain left in. Will need a urinary cath overnight which they'll remove before I leave. No stents.

The thing that has me petrified is that my surgery will be done in a 2 step procedure in that I will go to radiology first and have them locate the stone and place a guide tube under local anesthetic. I haven't read anything here from anyone who has had this done this way.

If you or anyone else can offer me any reassurance I'd really appreciate it.

Thx so much.

Dina

Hi, Dina!

My PCNL is set for tomorrow, so I can't speak from personal experience, but I did discuss your issue with my urologist. My first dr planned to do it in 2 steps as you described. I got a second opinion from someone who performs PCNLs several times a week, and decided to go with him just for his level of experience. He prefers to get his own access after the patient is already under. But I asked about the 2 step procedure that my other dr had planned to do, and his response was that that way was fine too. "It's just a matter of personal preference."

Probably whatever your dr is most comfortable with is fine. My understanding is that the patient is sedated in radiology, so you probably won't be very aware of what's happening.

Best of luck to you. This forum helped me relax a lot. I will post after mine is done.

Melanie

Hi Melanie...thx so much for the prompt reply. I'm very happy with the surgeon and I'm confident (based on his expertise) as he's done over 1000 of these but I'm just so scared of that 1st part. I have just one (sizable) stone that formed as a result of a parathyroid problem which I had surgery for a year ago. He said I don't seem prone to kidney stones so this is a one shot deal and a problem I should nvr have again since I tended to the parathyroid.

I'm sure all will go very smoothly for you as it sounds like you're in great hands and I wish you the best and hope if when you're feeling up to it you'd come back and maybe ease my anxiety a little ??. I have a long wait and not sure I'm gonna make it mentally.

Thx so much

Dina

Thanks for the well wishes! Yes, I'll come back on in a few days with an update.

Trust me, I can identify with the anxiety of waiting. Mine has been scheduled since late January. But once you gather all the info (like you're doing here), you may find it easier to put it in your back pocket and go about the normal day to day busy routines. The time passes quickly!

If the anxiety gets too much, don't hesitate to share your concerns with your surgeon's nurse or staff. They may give you some resources to try for help.

The great news for you is that this is likely your only time to go through it.

Hang in there!!

Thx again Melanie! Will be keeping u in my thoughts and prayers. 😊

Wanted to wish you and Melanie both the best! My PCNL is scheduled for the week of June 12th. Unfortunately I have to have 2 separate procedures, possibly 3, because I have a large stone in each kidney, and several smaller stones in each. I'm scheduled to have the first kidney done on the 12th, stay in the hospital, then have the second one done 2 days later. According to my urologist, they sometimes need to do a "clean up" procedure if there is any debris left, but if that is necessary he said it's super short and easy. I had vascilated between doing one kidney, recovering for a month, and then doing the other, but after driving myself and everyone crazy over it, I decided to just get it all done with in the same week. My urologist specializes in kidney stones, and like yours, does PCNL on a regular basis. He said he would never recommend me getting them done back to back if he didn't feel it was safe, and he's done several others where patients have been in a similar predicament. 

Here's to smooth, successful PCNLs' for all three of us, and speedy recoveries! Karen 

Hi Karen...I'm sorry for your double whammy. ?? I'm quite certain your doc would nvr recommend the back to back procedures if he weren't safe. And I'm sure you'd probably rather get it all done and not have to worry about going back again.

My main issue is pretty much my anxiety 😟 I'm not someone who generally deals with anxiety but for some reason this stuff scares me so much it's kind of all consuming for me. My surgeon was trying very hard to reassure me this is a pretty routine surgery. He assured me he'd have the nurses give me whatever I need to be comfortable while waiting in pre-op. He also promised I need nvr see the inside of the OR. I nvr use to be so afraid of medical procedures but I guess as we get older things change. I have kids and they're always first and foremost in my mind.

Anyway...so sorry for the rant. I'm so happy I stumbled upon this site as I was feeling very alone ??

Thank you for your reply. Your procedures will go just as smoothly and I hope we can reassure you as well!!!

Dina

Dina, believe me I totally understand and relate to what you are going through. I first learned last August that I would need to have these procedures done. I went into such a tailspin I cannot even begin to describe. Anxiety and panic through the roof, trouble sleeping, obsessing about it, etc. It honestly took me a good three months before I could somewhat settle down about the whole thing. I tend to be a somewhat anxious person to begin with, but this just sent me in to the stratosphere because I was so blindsided by the whole thing, and also because I was just coming off of probably about 10+ years of chronic/severe stress due to one life circumstance after another. 

I started doing a lot of reading and research and have found that meditations, especially guided meditations, have been scientifically proven to now only help a lot with anxiety, but also to help with quicker healing, less pain, etc. In fact, I'm not sure where you are, but here in the U.S., many hospitals actually utilize guided meditations for patienst who are undergoing surgeries they are anxious or scared about. 

Either way, if you're interested I'd be happy to point you to some of the guided meditations I got online that are specifically for preparing for surgery and recovery. I had never done any meditations prior to this whole situation, and I will say that it has helped a lot with my anxiety. 

Sounds like your urologist is very experienced with PCNL and is helping to be reassuring, which is awesome. I am SO grateful I found my doc who is doing mine. Not only does he do PCNLs all the time, but he is truly one of the most kind, compassionate doctor (or person) I have ever known. I adore him beyond words!! 

We will all be fine. Believe me, I know it's all scary sounding and it's so easy to conjure up scary thoughts and images. But it will all be okay. We are all in very good hands and especially in your case, it's just once and done. Plus you won't have to worry about getting new stones again. Yay! 

Let me know if you want links to the guided meditations. Karen

Karen thank u so much for ur kind words 😢 I guess I'm exactly where u were. Totally obsessing. I've actually scheduled an appt with a therapist to try and get a handle on my head. I would love any help I can get.

I am in the US (NY specifically) and with a top notch urologist. He like yours, is also very compassionate and caring.

I'm willing to try anything to help get me thru this. I have an amazing husband who's feeling a bit helpless as he's nvr experienced any kind of anxiety before. As a matter of fact if he was any more laid back he'd prob have no pulse lol.

I admire that u took the bull by the horns and found methods to help u cope. Any links or advice would be sincerely appreciated!

Dina

You are so welcome, and I'm happy to help however I can. I know that this is much easier said than done when you are dealing with this level of anxiety, but I've found what has also helped me a lot is to think of my situation and then think of others who have gone through a lot worse and are totally fine. 

For example, I know a 24 year old young man who is a friend of my son's. He suffered a catastrophic traumatic brain injury from a snow-boarding accident about 6 years ago. His prognosis was not good. However, 6 years and about 30 surgeries later, he is walking, talking, singing, and leading a near normal life. And we are talking surgeries that were like 10-12 hours a piece with all sorts of bone and skin grafts, etc. 

Again, believe me, I totally understand that this is much easier said than done when you are in the throws of this type of anxiety, but I found over time it has helped me a lot. 

I'm sending you a pm with links to the meditations and a few more things that might help. Hang in there, it will get better, I promise Karen 

Yes you are 100% right! Sometimes when I'm feeling really scared I try to slap myself back into reality by reminding myself we're talking about a kidney stone here. Nothing more nothing worse. And I think of all the ppl who've dealt with "real" problems. Like your sons friend. So happy to hear there was a positive outcome there!

Thank you for the info I'll look for the PM!

And Melanie....you're gonna do great and hopefully come back and tell us there was no fuss, no muss 😀

Thanks! And yes, I'll be putting your mind at ease very soon! I just got the call to report at 5:30 am tomorrow for 7:30 am surgery. I'll let you know how it goes, and then you can relax a bit more.

That's great Melanie! Nice and early so u don't have to wait around!

PS...if u don't mind me asking...are u in the states? Just wondering when tomorrow morning-ish is for u....

Good luck, Melanie! Like Dina, said it is good to be early then you don't have to wait. I'm also doing mine first thing, same time as you, but in June. Karen

Dina and Karen, yep, I'm in Ohio, so EST 7:30. Thanks to you both for chatting on my last waiting day... it helped with the last minute jitters! !

You got this!! 😊👍🏼

Now as with a few people on here who are petrified with having a pcnl procedure i was ablolutely terrified of having that done. infact i refused the first time and was given a general anasthetic.The second time i thought i needed to man up and i had the local anasthetic. As it turned out it wasnt to bad more uncomfortable than painfull but think i was a bit tensed up with being nervous about it. every other time it hasnt been too bad at all, so i kind of think that the proceedure of the guide tube would be pretty painless too.

good luck with your pcnl and honestly it really is nothing to worry about you only have a few weeks to go and it will all be over

Take care John

John, I'm wondering how you were able to have a PCNL under local? My doc who is doing my surgeries said that it has to be done with a general because it is x-ray guided and a very precision based procedure so they have to have the patient perfectly still. Are you in the states? I'm wondering if they are doing things differently with PCNL in other parts of the world because I've also read about bi-lateral PCNL being done in the same procedure with great success, but not here in the U.S. Karen 

Hi John...thank you for your reassuring words. Mine (the pcnl) will be done under general anesthesia. I don't believe I have any choice in that matter. So if I'm understanding you correctly, you've had a pcnl under a local anesthetic? 😳

I've never had a local and I guess my concern is that it penetrates enough so that I don't feel the tube being placed in the kidney. But I'm guessing if you had a local (for the camera) and it wasn't too bad it must be ok. I can only hope.

Thanks again!

Dina

LOL Karen...we must've been replying to John at the same time. But clearly we think alike 😆

John

Oh Jeez John...I definitely misunderstood that then. 😆 But I'll take comfort in the fact that if having ur stent removed under a local wasn't bad then hopefully the tube won't be 😏

Thanks, John. I think I'll have 2 tubes anyway because both surgeries are  less than 2 days apart. That's if all goes as planned. Thankfully I have the option to wait on the second one if I'm not doing so hot after the first one. If I knew it was completely safe, I would much prefer to do both in the same procedure because I feel like getting hit with general anesethesia twice in one week is a bit much. I've been assured by my doc (and others) that people have multiple surgeries withiin days of each other "all the time," so I'm going with that  Karen

Hope all went well for you Melanie! Healing thoughts for you that you're up and running soon! 😊

Dina

Hi Karen....can you check your PM's plz

Thx,

Dina

Thanks, Dina and Karen and Steph and all for all the reassurances and we'll wishes I can now say I am a PCNL veteran!

Surgery began at 7:30 Tuesday and I was in recovery by 9:00. All doctors and staff were so kind and reassuring, which helped a lot with my nerves. Pain in recovery was more of an ache than anything sharp. I especially had an aching heaviness when taking deep breaths, which I later learned was due to the angle of access being so close to my lung space.

Once in my room, I had a lot of nausea from the anesthesia (which runs in my family and I sort of anticipated), which made that first afternoon challenging. Because I couldn't keep anything down, they used anti nausea meds and dilaudid for pain in my IV, which helped. The discomfort from the stent (again, more of an ache in the low back and abdomen) only lasted an hour or so, and the medication they used for that was great.

By Tuesday night I was worn out but feeling good besides the fatigue. I didn't even need anything for pain by Tuesday night!

Wednesday morning I worked on getting out of bed and eating and getting stronger. They kept me overnight again just because I was still a bit lightheaded and weak but my pain level was good and my bladder function was good after they removed the catheter Wednesday afternoon.

I came home Thursday morning, which was a long car ride and kind of wore me out. But I feel stronger hour by hour.

So really, don't worry. Just take enough time off to let yourself recuperate sufficiently. The pain was very manageable and now is only noticable when moving around a lot, but I'm only taking regular Tylenol as needed for that now. And I don't feel the stent at all, I just need bathroom visits about every 2 hours because the feeling of fullness comes on faster than without the stent.

I have a handy stone souvenir that the dr gave my mom after the procedure.

Any questions, fire away!

Melanie, thanks SO much for the great update! I was thinking of you and sending good vibes your way Sounds like everything went really well, I'm so glad to hear!

I'm kind of afraid to ask this, but now that you've been through this and it's all fresh on your mind.....If you were me and have to have a large stone removed from each kidney as well as smaller stones in each, would you do one kidney, then go home and recuperate for a week or so, then do the other one, or would you do them both back to back, while still being in the hospital to get it all over with? 

My doc is planning to do my first kidney on a Monday am at 7:30. I would then stay in the hospital and he would do the second one on Wednesay afternoon around 1:00. So it would be about 2.5 days in between procedures. The other challenge in my case, is because my smaller stones are not right next to the big ones, he may have to grab those by going up my ureter. So if that is the case, I'll have a PCNL and a uterescopy done at the same time for each kidney. 

I'm still somewhat torn as to which way to go. Part of me wants to get this all behind me asap, but I'm also concerned about doing two of these, and in fact, maybe 3 in one week. The 3rd would be a "clean up" procedure, which is sometimes needed for leftover debris. Doc said if I do need that it would be really short, nothing like the first two.

I'm starting to wonder now why my doc is saying it's 3-5 hours per kidney for the procedure. I also got the same estimate from another doc at John's Hopkins, and it even gives that time estimate on the Johns Hopkins website for PCNL, so it is their general estimate. 

I know that Dina is having hers done in two stages, so the actual procedure will be 2 hours. But it sounds like yours was done all in one shot in 90 minutes. That is awesome!!

I also am sensitive to anesthesia, pain meds, etc. so that is one of my biggest concerns about doing these back to back, especially 3-5 hours of general twice with little time apart. I wouldn't be nearly as concerned if it was a 90 minute procedure like yours.

So thrilled for you that this is all behind you and it went well. Yay!

Oh Melanie I'm so happy to hear things went well! I've been thinking about you too! I'm sorry about the nausea ?? Some ppl just tend to be sensitive to anesthesia that way. But so glad you're feeling better now!

I think Karen and I are gonna drive you crazy with questions now 😝 So I have a cpl too...

Do you know how big your stone was? That may have contributed to the shorter duration of your procedure. Did they leave the drain in your back while you were in the hosp? Did they remove it before you left? If so, how was it when they removed it?

Also...how was the cath? I've nvr had one of those and they said I will need one over night.

I so appreciate that you came back to update those of us that are waiting on our surgeries.

Wishing you a speedy recovery!!

Best wishes,

Dina

Hi, Karen!

I really appreciate you and Dina rooting for me! I'll try to answer each post separately here, but if I miss something, let me know.

I can only speak for myself and how I handled the anesthesia, but I was too weak to stand up to get weighed the morning after surgery, and I took only about 15 slow steps Wednesday evening. My BP also hovered around 90 over 50 until Thursday morning. I can't imagine I would've been strong enough to head into the OR again by day 3. I'm 48, so not sure if age plays a part, but I'm otherwise very healthy and fit (I walk 2 mi every day).

It's really a choice you have to be comfortable with in talking with your dr. Maybe the recuperation would not be that much greater with 2 surgeries than it would with 1. It sounds like you also had the option of planning to do 2 and then reassessing after the first procedure? Maybe that would be the best way to hedge your bets, so to speak.

I wouldn't worry about the pcnl and smaller procedure through the ureter at the same time on the same kidney. They're up in there anyway to do the contrast and stent, so it probably wouldn't be any worse than that.

Does that help at all? It's tough to have to make choices when you aren't sure yet how you'll feel.

Hugs to you and happy to help anyway I can.

~M

Thank you, Dina!

Keep the questions coming! It's all very fresh still for me.

I had 4 stones: 16mm, 15mm, 13mm, and 9mm I think. I think the speed of the procedure had a lot to do with the angle of access he used, which was high (between my ribs) and very close to my lung, but gave great visibility of all stones.

There was no tube in my back after. My dr uses the "tubeless" procedure (which isn't completely tubeless because there's still the stent internally). My incision has one stitch which he'll take out next week.

The catheter is placed while you're already under anesthesia. It's painless and a great thing in the first day of recovery so you don't have to get to the bathroom. It also helps the nurse and dr monitor the urine color as you heal. Taking it out takes half a second and feels like a pinch. No problems there.

Hope that helps a little!

Sending hugs and positive thoughts!

~M

Thanks so much, Melanie! We so appreciate you coming on here and posting your update and helping with questions. 

I'm 59 and I do not walk 2 miles a day, but probably should! I would say I'm pretty healthy overall, but what you described is exactly my concern with doing two of these back to back. My doc keeps telling me "it's no big deal, you'll be fine," but I think he's being overly optimistic. 

Worse comes to worse, then I'll go home and come back another time for the 2nd procedure, or maybe it will be possible to wait another day while I'm there and give it a go if possible. I'm pretty sure I would still have to do the "clean up" procedure while I'm there, even if I'm only having one side done, but I'm guessing you didn't need that, which is great. 

Did your doctor say how long you have to have the stent for? That's great that it's not bothering you much, I'm praying that will be my case as well. 

I saw that you mentioned in Dina's reply that your doctor does a tubeless procedure. I had seen that, but I forget where. Are you in the U.S.? 

Thanks again and hugs back atcha!

Thanks so much for all the info Melanie. It sounds like you had a sensitivity to the anesthesia. Which you did say there was a history of in your family. I'm not anticipating any issue with that as I've always done well with anesthesia. As a matter of fact there's every possibility they're gonna have to keep me there over night by force lol.

It makes sense I guess that you didn't have the drain if you had the stent. My doc told me no stent but I will def have the drain. I believe the purpose of the stent is to make sure the fluid continues to flow with ease from the kidney to the bladder. And sometimes if there are any tiny pieces of stone that may still have to pass. The drain accomplishes the same thing as it's allowing the kidney to constantly empty. And also allows them to monitor the bleeding and see that it's clearing. I guess it's just a matter of the preference of the surgeon.

I certainly appreciate your willingness to help us along! It sounds like you had an overall positive experience. I hope you're taking it easy at home and feeling better!

Dina

Karen, you are correct that I didn't need a clean-up procedure, so by 9 am I was totally done. Sounds like your clean up would be short, so not much of a worry.

I should be getting the stent out Monday, so less than a week total.

Yes, I'm in the US. I live in central Ohio but went up to Cleveland for my surgery.

Sounds like you're keeping an open mind about getting the 2 done together or separately, which is probably the best approach. That way if you bounce back fast you can get everything all overwith, and if not, you can do the 2nd when you're recovered.

Hang in there. I know the waiting is hard!

You're totally right than the anesthesia problem was my biggest setback, and you will do fine in that regard.

Yep, drain or stent seems to be totally surgeon preference and accomplishes the same things.

Thanks for the well wishes for recovery. I'm doing lots of lounging around, which I otherwise never get to do!

Hey Melanie.. just wanted to check in with you and see how you're feeling. Hoping you're feeling good and back up and running!

Dina 😊

Thank you, Dina!

Not quite up and running yet, though! I was getting around the house pretty well (but a bit slower than normal) until stent removal yesterday. The removal procedure was painless (felt like a routine pelvic exam), but I got pretty sore by last evening, I think just from jostling the ureter and kidney around again. I'm taking some antispasm medications and Tylenol, and it's improving today.

It's all manageable if you just rest and don't expect too much too soon. Give yourself plenty of time to recover.

Melanie, glad to hear things are going well. My doc told me just what you described about after the stent is removed, but like you said, rest and not expect too much too soon. The good news is that now you are done with everything. Yay!!

I have a question......do you happen to know if your procedure was a "mini PCNL"? I ask because you have such a tiny incision and it was only 90 minutes to get it done. I had run it by my doc because I looked up "mini pcnl" and learned that if you have stones under 2.5cm you are a canditate. I know yours were all under that size, as are mine. My doc wanted me to ask if you knew whether they took your stones out whole or had to break them up. I am guessing the latter because I cannot imagine they could take the larger size stones out whole through such a small opening.

So good to hear that everything is manageable and sounds like you'll be back to good as new very soon! Karen

It sounds like you're doing great Melanie! And glad to hear the stent removal went well! I think I read in several places that it takes a little time to completely bounce back and by the end of the second week you can expect to be 100%.

Take advantage of the down time and pamper yourself 😊

My surgery is exactly a month from today. I wish it were tomorrow as the anxiety might do me in by then 😏

Hopefully you're having some nice weather and can sit outside and bask in the warmth a little! 😍

Thanks, Karen! Yes I am thrilled to be all done!

I don't believe it was a mini pcnl, as nobody up there ever called it that. But I do recall seeing that term online when I was resesrching. The incision looks to be just over 1 cm long. I'm not sure if he took any out whole. The stone he gave me to keep was a large piece but wasn't whole. I think he mostly broke them somewhat and sent all the pieces (except my souvenir) for analysis.

You and Dina can PM me your email addresses or cell number if you want and I can keep you better updated. I'd send mine first but I'm not sure how to use messaging on this site.

I really feel for you about the anxiety. I was pretty consumed by it the first month or so. It really was finding this discussion board that helped me settle down a bit. Also mapping things out and doing some planning helped too. I tried to pick up extra groceries and supplies, paid bills a couple weeks early, and moved other work and home commitments around to give myself a solid two weeks to get well.

It's no fun, of course, but you'll be just fine.

Weather is lovely here today. I'll go sit on my porch shortly.

Thx Melanie. We certainly appreciate your willingness to help ease our worries.

I will PM you my info. I don't know if emails generate automatically when you receive a PM but if you scroll all the way to the top of this page where your user name is...across to the right is an envelope. That's where you'd click to retrieve your PMs. Thx! 😊

Hi,

Would you mind sending me the links for meditation?  I have a PCNL surgery coming up I'd like to check it out.  I'm not worried at this point but I think it's a great tool to learn when those stressful moments arise.  

Thanks so much!

Brenda

Hi Karen, I realize this is incredibly random but hopefully fortuitous as well - I am slated for a PCNL next month and have been scouring the internet, much like you did before yours. Is your doctor Patrick Mufarrij by chance???? When you mentioned tri state area and the "other" doc at John Hopkins, I wondered!! If so, I would love to talk more as I am also very nervous and anxious!

dee21816, I had PCNL done for 3 large kidney stones just September of 2017. I am 44 years old. I had worked myself all up over having this surgery and it was a breeze. They put me under anesthesia and had the radiologists do the incision to guide the wire in so my doctor could then guide the scope in to remove my kidney stones. I woke up and never even knew they did the surgery. When I was sore the nurse would come in and readily give me pain meds. I was discharged the next day. I had to stay in bed at home for a couple weeks and couldn't lift or bend, but everything went fine and healed up nicely. I promise that I feel ridiculous for working myself up over it. I was terrified beforehand. I have stones now in my left kidney and if I have to have them removed then I won't sweat it. There were 2 things I had a major issue with. The first was that they made me wear a stint for a month before they were able to get me in to do the surgery. I felt like I was going to urinate on myself 24/7 and couldn't sleep at all. It drove me nuts! The other thing is that they didn't tell me that they put lidocaine in people's eyes when they put them under anesthesia. After I woke up I thought I was going blind in one of my eyes. It hurt so bad and was blurry. I completely freaked out and asked them to take me to the ER. They called the anesthesiologist and he had to explain to them that I must've had some kind of reaction. I ended up having to sleep all night with ice packs on my eye. By morning it was better. I don't know if that's something anyone else has experienced but it was THE most traumatic thing I have ever been through. You may want to ask if they put anything in your eyes. 😐 Otherwise, give it a few weeks to a couple months and you should be healed completely. Oh, and my incision was only a little more than an inch wide. If you have any other questions I'm here for you. Good luck!!!

I wish I could reassure you somehow but I know it’s hard to relax regardless of what anyone says. Please feel free to ask anything specific you want. I’ll do my best to answer if I can help. 

Dee, I totally understand your anxiety, I think most of us here were pretty anxious before the procedures. In fact, I was so scared that I waited about 8 months to have my procedures!! In my case I had to have a PCNL on both kidneys because I had large stones in both that couldn't pass. I was told I would need to separate procedures, and possibly three depending on how everything went. Well all I can say is I could not have been more amazed at how smoothly everything went. I only ended up needing 2 procedures because they were able to get everything out and I was blown away at how quickly I recovered and how little pain I had post op for both procedures. I only took Tylenol and really didn't even need that very much. I was in the hospital for a week because I opted to have both procedures done back to back to get them over with, and my doctor felt that was the best option. Upon my return home I was up and about almost like nothing ever happened, it was really incredible! The worst part for me was an awful rash on my back from a reaction I had to the surgical tape, but other than that everything was a piece of cake. I am THE biggest chicken on the planet when it comes to any type of procedure. So please believe me when I say that if I can do this, anyone can. I would highly recommend a book that helped me tremendously, it's called "Preparing for Surgery," by Peggy Huddleston. Please ask away if you have any questions and I know it's easier said than done, but it will all be okay and you'll have this all behind you before you know it. Karen

Hi, Dee,

First of all, as you can probably tell from the replies so far, anxiety is a very normal reaction to finding out you're headed toward surgery. I think most of us on this thread were pretty frightened and glad to find that we weren't alone!

Second, most of us were pleasantly surprised with the outcome. The complication I had in terms of my pleural effusion is rare, and I think really doesn't happen much when the access tube is placed in radiology, as in your case.

Please share any questions you have. You have lots of PCNL veterans here to help!

Finally and coincidentally, two days ago I experienced the attempted passing of another stone that remained in my other kidney. Yowza!! I now know that surgery is far preferable to letting stones pass, at least in my experience! I will likely need ureteroscopy or lithotripsy to clear out remaining stones, or maybe another pcnl if the total stone load is high. But, again, I'd opt for any of those over what I went through on Sunday...

Let us know how we can help you.

Melanie

Dina 

Hi, Dina! I almost texted you Sunday after I got home, then decided to see what my doctor recommends before I gave an update. I will meet with the nurse practitioner Friday because my doctor is out. Once I find out if the current stone is still stuck, I'll know how quickly I need to do something.

Thanks for the well wishes. Hope you are doing well too!

We still need to plan our PCNL reunion!

Ugh Melanie I ‘m so sorry you’re dealing with this again.  I hope you don’t have a stone stuck.  I’m sure your docs have told you pound water. I’ve heard lemon water is very good when trying to pass stones.  Please feel free

To text me anytime!  And yes Karen and I were just saying we can celebrate a year out of surgery soon!  A virtual drink is in order 🍻

My surgery is scheduled for May 4th. I’m not having or never did have any pain. I was able to pass many stone without pain. 2 years ago one got stuck an had a ureteroscopy. That was a piece of cake. Had many lithotripsy’s years ago. I also have had many intestine resections for crowns disease. You would think that this should be easy for me. But the thought of the tube being placed in my back while I’m awake is making so stressed. If I was sedated and didn’t know what was going on that would be better.

Thank goodness I found this forum to talk to Veterans like yourself.

The Dr told me they are only giving Ma a local to put the guide tube in. If I was out for the entire thing I wouldn’t care what they did.  That’s the one thing that is making me anxious.  

Thank you for your thoughts and comments. I’m so glad I found this forum.

Of my posts from last year you’ll see that part was making me most anxious too!  But in all honesty it wasn’t bad at all.   You don’t feel them putting it in. They give you a local and i was Instructed to stop him if I felt pain and he’d give me more local. I did do that once and he immediately gave me more.  The best way to think of it is as if you were at the dentist and having a tooth worked on under Novocain.  You can feel them working on your tooth and there might be a little pressure from them working on it, but you’re completely numb so there’s no pain or discomfort involved.  I did start to feel

some pain while waiting to be taken to surgery (guess the local was wearing off) so they have me some pain meds and it was fine.  I know How scary it is to think of those procedure cuz I felt the same exact way. But please believe me it’s not nearly as bad as we make it to be in our minds.  And everyone caring for you will be great!!!  

All the best! 

Dina 

Melanie, sorry to hear about your stone passing and the other stones remaining. Hope you are able to get them out soon and be stone free! Are these still remaining from your procedure last year or are they new ones? Either way I hope they are gone soon and you're feeling better! Karen

Thank you, Karen and Dina!

So I had my ultrasound and xrays today. It appears that the stone (on the left) from 3 days ago is no longer blocking ....that's the good news. The bad news is that there do appear to be more larger stones (largest is about 8mm) in the right kidney again (this was the kidney that had the PCNL last year). They are either brand new or have grown from the 2 or 3 mm fragments left from surgery. Either way, I'm baffled. My 24-hour urine study in June showed that I'm doing everything right from a dietary and fluid intake perspective. I really don't want to have kidney procedures every year, but I'm not sure what the cause is. I am meeting with the nurse practitioner Friday, so maybe I'll learn more then.

Thank you both for your positive thoughts!!

Dee, Dina's experience sounds similar to what you will have, so hopefully that is reassuring to you. I just wanted to add that many doctors will use sedation when requested, so if you are really anxious, you may want to ask your doctor if that is an option for you. Keep us posted as you get closer. We're here for you!

Melanie

Thank you again for your support.  Will check in with you when it gets closer. I’m sure I’ll start freaking out the week of the procedure.

Oh goodness, Melanie! Agree with what Dina said if you haven't had blood calcium levels checked. All of this stuff can get so confusing. Your urine calcium could be fine and if your blood calcium is high it could be a sign of a faulty parathyroid, which can cause stones to form even when you are doing everything right as far as water intake, diet, etc. Hope the nurse practitioner meeting on Friday provides you with some answers. Will be thinking of you! Karen

I had the surgery which wasn’t all that bad. I wish my doctor was a little more informative as to what to expect after. I found out more on forums like this.

My problem now is severe pain from the stent that has to be in for another 5 days. The pain started 2days after surgery when I urinate. The nurse said take the pain Meds. Which I have and the helped. They didn’t even give me enough for 4 days. Has anyone had this problem?

~Dina 

That is my next step. I just don’t want them to think I’m an addict. I just about scream in agony when I go. 

Hey.. I'm new here. I'm scheduled for PCNL in 4 weeks. They will be doing the tube before surgery in radiology with local. My questions are does this hurt and also I am a recovering addict. I have 5 years clean and had several kidney stone surgeries but not this.  I choose not to take narcotics if I don't have to.  Is Tylenol or toradol sufficient for the pain?

I just had the surgery almost 3 weeks ago. They told me the same thing just a local for the tube in radiology. They did sedate me, and I don’t remember a thing. I don’t even remember being rolled into the operating room. I woke up in a regular hospital room. 

I do suggest you take the pain Meds when you wake up, at least for the time your in the hospital. When I got out of the hospital after 3 days I really never needed the narcotics. 

Wish you the best. Trust me I felt the same way as you do

I had the tube placed before my surgery. It was done under local anesthetic.  I was not sedated but I’m sure if I asked to be, they would’ve complied. Their main goal is to make things as easy as possible for you.  As for the pain meds, they gave me oxy and toradal intravenously and the toradal was the most helpful.  They gave me pain meds for home but I didn’t take them. I can totally understand your apprehension with your history.  Kudos to you for 5 years of sobriety!!  Maybe you can discuss this with them ahead of time and come up with a plan.  Best of luck with your surgery. 

~Dina 

Well I am home from the PCNL yesterday.  Or the attempt.  After they put the tube and guide wires in before the surgery in radiology I was ok. I didn't hurt till I got back waiting on the procedure. I started hurting like I have never hurt before.  When I got to the room around 5 pm I could tell something was wrong.  Turns out they were unable to get to the stone.  So I have come home with a tube, bag and stint.  They are going to try again July 13.  If it doesn't work she said they will go up me but it's more dangerous. 

Dina 

Thank you !   😘

Best Regards,

Dina 

😊👍🏼

Your post caught my attention. I had a parathyroid gland removed about 5 years ago. And now I have a large kidney stone and several slightly smaller ones that I have to have removed by PCNL. I'm very nervous!

MY PNCL is scheduled mid December. How did yours go?

I had a parathyroid gland removed 5 years ago. Just discovered i have a large kidney stone and several smaller ones. My surgery is scheduled mid December! Very nervous!

my surgery went well pain was minimal my stone was infected so i had to stay in hospital few extra daysyou will be fineI had a great surgeon and felt very comfortable

Hi...my surgeon said my kidney stone was definitely a result of my parathyroid glands being out of whack. The elevated calcium levels caused the formation of the stone. He said since I've corrected that issue I shouldnt have any further issues with kidney stones. My surgery was very successful. My surgeon got the whole thing with not even a grain left over. I too had an infected stone which led to a longer hospital stay. I'm sure your surgery is gonna go great!! I know its nerve racking to wait, but try and keep positive it'll be here and done before you know it!

Best Wishes!!

Thank you so much!!!

My pleasure! 😃