Questions/concerns about upcoming ureteroscopy/stent placement

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bef-99
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Date Joined Jul 2014
Total Posts : 4
   Posted 7/1/2014 6:41 PM (GMT -7)   
I was diagnosed with a 3 x 4mm kidney stone 7 weeks ago and through the poor quality of medicine in the area it took until yesterday to finally see a urologist. Now I have to have a ureteroscopy next week. Everywhere I have read said it is awful and that the stent afterwards is miserable. Has anyone had a different experience? How long did it take you to bounce back after the surgery? How long did you have the stent in? Did you remove the stent yourself? If so any issues? Should you take pain meds before removal?

What I am really confused about is they did an ultrasound today and couldn't locate the stone, but the right kidney was not functioning normally which is why they feel the stone is blocked somewhere. If it is blocked shouldn't I be in a crap load of pain? I have had pain off and on over the past 7 weeks but haven't been in pain in over a week. I also have fibroids pressing on the ureter, is it possible the ureter was blocked during the ultrasound because of how I was laying by the fibroids? Because I do have multiple issues I am afraid that this surgery will be for nothing and I will be in pain and uncomfortable for absolutely no reason. I am leaving for vacation 5 days after the surgery so really don't want to be miserable during my families' vacation.

Any advice or information about the procedure and what to expect is appreciated.

nvrthesame98
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Date Joined Jun 2008
Total Posts : 6706
   Posted 7/1/2014 7:49 PM (GMT -7)   
Hi bef and welcome to the forum! I cannot tell you anything different then what you have read and I hate that but I'm not going to tell you something thats false as I know it.

The procedure is painful and the stents in place are extremely uncomfortable!! Thats my experience as well.

I had double j stents in place following lithotripsy to break the stones in my kidney. They were removed through the scope 8 days later when I threatened to remove them myself, which by the ways not advised and extremely difficult to do. I cannot imagine going anywhere past the bathroom 5 days later with them in place!

The risk of losing kidney function from a blockage however is a huge risk to take and no your not likely to be in much pain unless they were blocking ureters, or urethra.

I would think they are waiting a week they're not too concerned about a total block and I personally would ask them to look again and use some type of scan or even a different ultrasound.

The choice is up to you but I'm big on second opinions even if I have to travel to an out of area Dr.
Vickie
CHRONIC PAIN MODERATOR

bef-99
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Date Joined Jul 2014
Total Posts : 4
   Posted 7/1/2014 8:36 PM (GMT -7)   
Thank you for the welcome and additional information. I honestly would love a second opinion but after fighting 7 weeks to get this appointment I am scared how long it would take to get another opinion. I had to go to three different doctors to get a referral the first two (urgent care and the ER) refused to give me one even though they were the ones that diagnosed the kidney stone. The GP is the one who finally gave me the referral but didn't think I needed one because he misread the radiologist report and thought the stone was still in the kidney itself and not at the mouth of the ureter. Then his office sent the referral to the urologist office and it took two weeks to hear back from them. The urologist's office only does scheduling through the GP's office who then notifies you. So the nurse at the GP's office changed my appointment before asking me. They were trying to be nice and get me in earlier but actually scheduled it for the same morning I had a 2nd opinion appointment about the fibroids. Literally the only day/time I couldn't do it. So instead of getting me in earlier it delayed it another two weeks. So after 7 weeks I feel like I am already pushing things. I have been advised not to even do my job next week because I will be at a remote location so the stone is causing more problems than just the occasional pain. Unfortunately, I can't get out of work, so I am choosing to go against doctor's orders. I am actually scared to go not because of what the doctor said but because the last time I was there (earlier this summer) I had the worst attack of pain so far from the kidney stone and it took me over a week to get the pain and nausea under control again. At least this time I have stronger pain meds and anti-nausea meds in case it happens again

The ultrasound was me trying to get out of the procedure. The ultrasound is also why he thinks the ureter is blocked. He is even slightly worried that it may have calcified/implanted in the ureter wall because of it hasn't passed yet. They won't give me a 2nd ct scan because of my age and the level of radiation exposure. They would have done the surgery this week if I had let him, but that would have meant missing work which I can't do.

I have been told I can remove my stent myself after a week. He says many doctors allow patients do this routinely but he prefers to do it himself. I will be out of town though seeking a third opinion for my fibroids then a family vacation, so as long as I am comfortable with it I can do it. So I am planning on doping myself with tramadol an hour before I do it. It may come out early if it is the only thing bothering me. I read one medical journal (which I am kind of iffy about) that said there are no medical studies proving the benefits of stents in procedure that don't have complications. They even hinted that it was another moneymaker. Like I said I don't have much faith in the journal, but it does raise questions considering some sites have mentioned that stents aren't always placed.

I am just really frustrated with the medical practices in this area at the moment. If really frustrates me that this could have been treated 7 weeks ago if someone had listened to me.

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 7/5/2014 5:34 PM (GMT -7)   
bef-99-

I've had several scopes and stents. My experience is pretty much what you have heard.

I did have one stent I removed myself. I had a long length of suture hanging out and was told to take a pain med 1/2 hour before and to pull it like starting a lawn mower. also not to stop once it was moving until it was out. This was the only one I had removed while I was awake and it wasn't pleasant.

My body doesn't do well with the stents and I have only managed to keep one in past 5 days once and I was in the hospital at the time.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn, Kidney disease

Nissen 6/06 and 5/09
#3 8/24/11

bef-99
New Member


Date Joined Jul 2014
Total Posts : 4
   Posted 7/5/2014 10:17 PM (GMT -7)   
Thanks Bill for the information. I actually decided to cancel my surgery today. I am going to wait until after my vacation and then get a 2nd opinion in a different city. I know I will probably have to have surgery but want to enjoy my family and my vacation instead of being miserable. I am in no pain what so ever from the kidney stone at the moment and have been that way for 2 weeks. Who knows maybe it will pass on its own while I am waiting for the 2nd opinion.

I have also been reading a lot of medical journal articles related to stents and probably will elect not to have one unless there is a complication. From what I have seen the studies are showing they aren't necessary in most cases anymore and are leftover from earlier days of ureterscopy when the equipment and procedure were rougher on the body. Most studies seem to show there is no difference in immediate post-operative pain (which in theory was one of the reasons for it in the first place) and that all the common problems (blood in urine, dysuria, general uncomfortableness) is not seen in the patients without stents. Yes, the ureters can swell shut but anti-inflammatories can treat that. So I am going to approach the new doctor about this option. I rather take my chances and bounce back quicker and I figure there is a chance either way that you may end back in the ER.

nvrthesame98
Forum Moderator


Date Joined Jun 2008
Total Posts : 6706
   Posted 7/7/2014 1:20 AM (GMT -7)   
Bef I think you have done your homework, took all the things you've learned and made a informative decision in your health care choices. Good for you! I think stents are fast becoming a procedure of the past as they are fairly "old school " and many urologist don't use them unless complications arise. Now that you have made your decision I have to say it was the worst experience of my life including 2 emergency C-sections and 4 normal deliveries!! Lol. From the moment they were placed I had the constant feeling there was something falling or hanging out of my body and they were a constant state of irritation. In office they are removed with a sterile water flush and even that was horrible, can't imagine a dry pull!

Anyway glad your going to shoot for a second opinion and while your away for your job just make sure someone's aware of your situation in case an emergency arises, save time that could be crucial having another Dr look for what is wrong.

Hopefully these things passed without further ado and you won't continue to produce more. Have a great vacation with your family!
Vickie
CHRONIC PAIN MODERATOR

McClintick
New Member


Date Joined Jul 2014
Total Posts : 2
   Posted 7/7/2014 4:17 PM (GMT -7)   
Kidney stones can settle sometimes, they are still there but have settled in a place where they are not moving around. But any kind of movement may cause the stone to shift or move inside the kidney. Thats why it hurts, because the stone is moving around. But if it's a blockage then it's serious, and you should follow the doctors advice whichever doctor you end up going with. My stent only hurt when i was urinating sitting but if i laid down and used a urinal it didn't. But oh god it hurt when i didn't pee laying down. But otherwise it didn't hurt. My stent was inside so it had to be removed via surgery, i have never heard of removing a stent yourself but there must be some that can be and others that cant. The risk of doing nothing could be worse and damage your kidney from the stress on the organ if there is even a small blockage.

You do not want to damage your Kidney so even if the stone passes you might still want to get a kidney function blood test when you get back from traveling for work.
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