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Thread: Kidney stone surgery?

  1. #1
    Senior Member ~Lin's Avatar
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    Kidney stone surgery?

    First off, I am not SCI and so hope this is the appropriate section to post this. I have a genetic connective tissue disorder, Dysautonomia, and a movement disorder called Primary Myoclonus. I use catheters due to spasms that prevent me from voluntarily relaxing to void and I must use my abdominal muscles to force the urine out or cath.

    I'm having kidney stone surgery Monday, and I'm somewhat scared. I haven't had good experiences with general anesthesia in the past, so thats a big part of it. This started June 9th when I woke up with moderate right flank pain. I thought it was related to my chronic pain and muscle issues initallly. As the pain increased I wondered if I had a kidney infection, but the area of my back was also swollen and protruding and I didn't know that could happen from the kidneys so again wondered if it was related to my chronic pain and muscle issues. But I also had nausea, which increased to severe nausea with vomiting and the pain became quite severe so my roommate took me to the ER. They diagnosed a 5mm kidney stone by CT scan. I was discharged with Bactrim, Flomax, but no pain meds because I cannot take oral NSAIDS and already am on narcotics for chronic pain. (I already have a prescription for zofran odt) June 13th I returned to the ER around 7 pm after being unable to urinate since 10 am, and having felt like I needed to urinate since around 1pm but only managed to get a few dribbles with the catheter. The pain was also getting severe, though less so than the first time. I was discharged with more flomax, and a script for Toradol pills. On the 17th I again was unable to pee and the pain became severe, I took one of the toradol pills and waited out until I started peeing again, if I hadn't eventually began peeing I would have gone in. The 18th I was incredibly ill, not much pain but the nausea and vomiting with severe weakness but I blamed much of this on having taken the oral Toradol which I will never do again. This entire time I tried to reach my urologist as I had an appt scheduled August 7th, and was trying to get it moved up. Thursday I FINALLY received a call back and their idea of getting me in immediately was July 2nd. Wednesday I had given in and gotten a recommendation of a Uro from the ER and called them, they also called Thursday and scheduled me to see a PA on Friday morning.

    At the appt Friday they took an xray and determined the location of the stone which is currently in the ureter. She said that there is only a 50/50 chance a stone of this size can be passed without surgery (something the ER never told me!) and recommended surgery. She said if I was to return to the ER again they would do emergency surgery. She said with it being friday I wouldn't be able to have surgery until the following week (barring ending up in the ER again), so I left thinking well maybe the stone will manage to pass before the surgery... But I was called rather quickly by the scheduling person who said the PA had requested to get me in ASAP and so I'm scheduled for 3pm Monday, with an arrival time of 1:30. I know that they are to put me under general, go in through the urethra, see if they can remove the stone as is or break it into smaller pieces to remove. Then place a stent in my ureter, which will be removed in 5 days. I never asked how they remove the stent? I was pretty dazed at the time and couldn't think of questions. Do I have to be put under anesthetic again to remove the stent? She said I will have a lot of blood in my urine following the surgery and thats normal. She was concerned about the infection still being present and prescribed more bactrim.

    I'm someone who the more info I know, the less anxious I get about something. I like to know exactly what is happening to me.
    Last edited by ~Lin; 06-22-2014 at 06:44 PM.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  2. #2
    Senior Member Donno's Avatar
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    I've had a couple of unpleasant experiences with general anesthesia, and the last two times I had to go under, I made sure that I had a talk with the gas passer before surgery. In both cases, I explained what had happened to me, and how frightening or uncomfortable it had been. It seemed to help, as I had no complications either time.

    Can't help you with the kidney stone part of your problem.
    Don - Grad Student Emeritus
    T3 ASIA A 22 years post injury

  3. #3
    Senior Member ~Lin's Avatar
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    Thanks! Yea the PA said I will get to talk with the anesthesiologist about my past history. They have difficulty putting me under, and then I wake up too soon and wake up fully, as opposed to being groggy for a while. So like the first time I woke up on the table and heard them arguing over whether or not I was waking up, and was terrified that I was waking up in the middle of the surgery. I also have a history of issues with sedation, such as the sedation they use prior to putting you under. So I have some real fears going on, and then some ones that I know are mostly irrational, like I'm afraid of anesthesia awareness thinking that my experience puts me at a higher risk of such a thing happening.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  4. #4
    Senior Member ~Lin's Avatar
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    Nothing? No one has had kidney stone surgery? No nurses know anything about kidney stone surgery?
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  5. #5
    Lin i can't help you either other than to say good luck. I too have issues after general i get extremely nauseous for days or weeks afterwards. Now they will usually put a patch behind my ear and that helps alot. I just take it off 3 days later. I forgot to tell them before my gallbladder surgery 2 weeks ago so i am still paying for it.
    T6 incomplete from MS and an aortic aneurysm surgery that went bad.

  6. #6
    Sorry you are up against this. I have had many stones, but never needed surgery to have them removed.
    I have had periodic paralysis all my life. I lost my ability to walk in 2011 beginning with a spinal block, which was used for a hip fracture caused by periodic paralysis.

  7. #7
    Senior Member ~Lin's Avatar
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    Thanks smash, the nurse mentioned they will probably put the patch on me since I've also gotten really nauseous after general in the past.

    I'm in pre-op waiting right now. I'm looking forward to speaking with the anesthesiologist, since thats where most of my fears are due to past experiences. I also have a standing script for zofran odt for GI issues so that should help if I stay nauseous after. I've already been going through loads of it though since the stone has caused nausea and vomiting. Staying nauseous for days after anesthesia sounds horrible! At least with the stone caused nausea it comes and goes, it gets really severe and I throw up once or a few times, but eventually it passes for a while. Same with the pain, it gets really severe but eventually cycles down. The only thing thats really been constant is this awful burning sensation that feels like I need to pee nonstop. Its the worst when the stone blocked urine from getting to my bladder and I couldn't pee at all.

    I'm also a bit anxious about the stent removal. I did find out that its simple, you don't need to go back to surgery or anything. But it doesn't sound pleasant! They either have strings attached that will hang all the way through the bladder and urethra to the outside, and they pull the strings to remove it. Or they do a cytoscope to grab the end of the stent from the bladder and pull it out.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  8. #8
    Lin good luck again will be waiting to hear how it goes! Take your time posting however! Will be looking for it tomorrow or wednesday.
    T6 incomplete from MS and an aortic aneurysm surgery that went bad.

  9. #9
    Super Moderator Sue Pendleton's Avatar
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    You can ask for an infusion into the bladder during the stent removal. I understand I had fentynal instilled in my bladder during a biopsy cystocope 2 years ago and by the time it wore off about 48 hours later Tylenol and lots of water helped.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  10. #10
    Senior Member ~Lin's Avatar
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    Thanks guys. Ended up having the stent removed already.... Hopefully I do ok, they said if I start getting symptoms like I did before the surgery I'll have to go back and be put under again to place a new stent. Yesterday really fucking sucked after the point I was posting from pre-op.

    The good first, the anesthesiologist was great and he listened to all my concerns and made sure the stuff that had happened in the past didn't happen this time. So next time I'll feel much better about going under general. I think they were a bit rough with me as I'm having some joint issues, normally I cannot maintain the same position for very long, and certain positions I can't really do at all without problems, so I guess its to be expected with the surgery positioning and them moving me around. But my shoulders are especially bad and I'm getting a lot of crunching in them so I think they were a bit rougher than they should have been knowing about my conditions. They did successfully remove the stone.

    Now the bad. They were running a bit late, which I think may have affected this. Like I was scheduled to start surgery at 3 and the Dr didn't even come in to speak to me until 3:30. Afterwards, they seemed in a rush to close up. Later I learned the phone lines for the surgery center close at 4:30. So I got back to the pre-op room, they gave me IV zofran for the nausea and that worked well. But immediately told me my roommate was on her way to pick me up and would be there any minute, and I can go ahead and get dressed. I thought yeesh, they monitored me longer after plain procedures without general anesthesia than you are right now... But I move the gown and I see about 3 inches of stent, then the curl, then the strings. I knew this was wrong. I KNEW the top curl is to hold it in the kidney, bottom curl in the bladder, and the STRINGS hang out of the urethra for removal. I yell for the nurse. She tells me its normal... I get dressed, and rushed out into my nice new van that my roommate was driving (has a/c, hers doesn't) I'm in a lot of pain, but figure its normal. We get to the house and as I get out I realize my pants are all wet, the seat is all wet. I'm like thats really odd... God I hope my dog didn't pee the seat in here already. (no, I did) So I head in and go straight to changing my underwear and pants, and it takes all of about 2 minutes to suddenly feel urine leaking under my shorts. At that moment I knew exactly what was going on, the fucking stent was acting like a catheter holding it open for me to just leak. I told my roommate what was going on, and she offered me an adult diaper. No clue why she had them lol but she went digging for a while and pulled out some and I put one on and another fresh pair of pants. Then I called the number in my discharge paperwork, and got the automated message that they're closed and to call during business hours. No emergency instructions, wtf. So I called the hospitals main line and said I'd had outpatient surgery, there was a problem, and I needed to speak with someone. They told me to call x number and request the on call Dr. So I did so. I asked at that number how long until I'd be called back. I was in a LOT of pain and of course still leaking. I was told within 15 minutes, it was 30. The Dr who calls me can't find me as a patient, I get frustrated and say I just had surgery there TODAY. And she goes oh you had surgery? You're not a primary care patient? You've got the wrong line" CLICK. Didn't even tell me who I should have called! So back to the main hospital line. They suggest I try calling the group the Dr who did my surgery is from, called Urology of Indiana (btw, this group was also where I had my previous urologist who was an idiot and an asshole. When I had to see them for this because I couldn't get in with my new urologist, I specifically requested to not have the guy I used to see.) So I did, and finally was called back by a nurse on call who told me to go to the ER. I was about to do so anyway, but REALLY didn't want to go, I had wanted to just curl up in bed when I got home, so I was really hoping I was going to be told to just remove the stent myself and follow up the next day. I had read online that sometimes patients are instructed to remove the stent themselves when its time.

    So, off to the ER. I'm doubled over in pain at this point while my other roommate pushes my wheelchair. They take me straight back to a room, and its not too bad of a wait for the Dr. But he doesn't look at whats going on at first, just tries to see the records for the surgery and doesn't get access to much, and he leaves to try to contact the on call urologist. Little bit later he comes back and says he's going to take a look, and says something about how he'd probably be asked why he didn't look when the urologist finally calls back. When he sees how much of the stent is sticking out he says oh yea that has to come out, and goes ahead and removes it. Just removing it probably cut my pain in HALF. I guess it was causing all kinds of spasms. But then I had to lay there for almost 3 hours! My roommate and I watched 3 episodes of the closer on the chromebook I'd had with me in postop. I get an apology that the urologist's pager wasn't working or some shit. And they say ok you can leave now, just follow up with the Dr who did the surgery tomorrow. Btw, they also kept asking me if the stone was removed or not, freaking me out, I'm all I didn't know it was possible it wouldn't have been removed?!

    So today I call and explain what all happened and the nurse speaks to the Dr who did the surgery. Comes back and says they'll leave the stent out for now, but if I have the symptoms I had before the surgery with inability to pee, severe back pain, I'll have to have it replaced. She verifies the stone was removed. It was completely stuck in the ureter, there was no way that thing was going to pass on its own. The Dr wrote how hard it was and how stuck it was, and he broke it up with the lazer to remove. She did explain that the reason the ER kept asking me if they'd removed the stone was because I'd also had a kidney infection, and sometimes they just stick a stent first and come back later to remove the stone if infection is present.

    The Dr was also partially deaf/hard of hearing. I'd never met him before the surgery. He came to talk to me, and every time I said something he yelled "WHAT?" and stuck his ear in front of my face. Not real comforting, but I was whisked off right after speaking to him. He asked me what I wanted for pain control, I asked what he usually gives. He said percocet. I said I'm in a pain management program, I don't know if thats safe to combine with my meds if I'm even allowed to take it. He ignored this, most likely because he didn't hear/understand what I was saying. I was discharged with a percocet script. I called my pain management Drs office this morning and explained the situation, first the woman freaks out on me saying how I'm not allowed to accept pain meds from ANY OTHER DOCTORS. I say thats why I'm calling, what should I do. So she asks if I filled the script or took any, I said no I didn't want to do anything with it before I talked to my Dr. She says good girl, and transfers me to leave a message for the triage nurse. No one called me back today. But then I'm in less pain now than before the surgery, and I couldn't take any additional pain killers before the surgery either. The first ER visit they tried writing me for Voltaren, I explained I can't take NSAIDs because of an ulcer history and they make me sick. So I got nothing. Second time, they prescribed toradol. Another nsaid, so I didn't think I'd use it but filled it just in case and the Dr had said take with food yadda yadda.... One night I was desperate enough I took it, the following day was absolute hell of stomach pain, nausea, and vomiting, no more oral toradol for me. (They gave IV toradol on all my ER visits). Hurts like hell to pee though, and lots of blood.

    This saga better be fucking over.

    When I got home from the ER, I noticed with my surgery discharge paperwork a satisfaction survey. For the first time in my life I'm going to enjoy filling one of these out...
    Last edited by ~Lin; 06-24-2014 at 07:20 PM.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

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