I recently had a kidney stone, that required trip to ER due to the extreme pain and nauseous. After pain treatment and CT scan at ER, they confirmed size and location. Sent me home, and thankfully stone passed on its own some time the following week, as confirmed by an x-Ray.
However, the scan also showed several smaller stones in the other kidney, which had been known for several years due to prior scans for other reasons.
They have recommended shock wave lithography (ESWL) to now treat the stones that have been there for a while, although this was never recommended before.
Given my 50+ years with T1D, and already having some kidney damage (stage2), I am concerned if the ESWL could cause more damage.
Does anyone have experience with ESWL and effects?
I also understand the first ESWL may not completely work, so could be additional treatment and or stents with direct removal.
So thinking the leave it alone option may be better.
I am not a T1. But I did have ESWL a few years ago, when in the throes are passing one of those darn stones… The procedure only partially worked: it broke some stones but did not shatter everything into dust. Still, it helped a lot. I had absolutely no secondary effect that followed the shock wave procedure.
I did have to carry some kind of a shunt inside the urethra for a couple of months to help pass some of the leftover stones. That thing stopped me from doing any sustained walk over 3-4 miles because of increasing pain from friction with it. I couldn’t wait to see it come out.
It has now been almost 5 years. I have not had recurrences, although 50% of people do. I don’t look forward to a recurrence… I do drink everyday like a sieve to stop it from coming back, but I am not sure if it really helps
I have always been drinking lots of water, although had decreased a bit the past few weeks as I had many changes to my work routine. I also learned that many of my low carb food choices are on the list of foods to avoid. It was recommended that I add more calcium to balance them.
But question is, they want to treat stones, that have been there since 2013 or longer, and I have had no pain symptoms for that kidney. So should I pursue having them removed,?
Speaking for myself: the experience of dealing with kidney stones the first time, for me, was intensely painful. I told my wife that I was glad I went through it because undergoing it made me feel better about letting her be pregnant for the two of us: I did not feel that she had been the only one any more
In the research I did, I found out that kidney stones are quite likely to recur (50% odds in the next 5 years). Because I really don’t look forward to undergoing this again, I elected to have both of my kidneys blasted with ESWL. In both kidneys, I had stones that must have been around for a while. I felt that doing whatever I could to make it less likely for these stones to become a problem later would be good for me… I figure that whatever stones are there now will eventually attempt to pass through some day.
So, in my personal case, based on the facts I saw, my decision was to BLAST! I am not sure if it was the right one. I am sure it was somewhat influenced by pain I would tend to advise others to do what I did, but I feel that our personal criteria may sometimes be different?
Thanks Michel, Glad to hear it worked out well for you (so far !!).
I’ve done some more research, including understanding difference between urologist and nephrologist. I think it’s the nephrologist that I need to meet with for a second opinion, since it’s really impact on current kidney function that I’m concerned about, and if the ‘blasting’ would be potential risk for progression of kidney stages. Don’t have a current nephrologist, so will check into that.
Interestingly, I did find studies that were checking whether doing ESWL would CAUSE diabetes. Some speculation that the blasting on/near kidney could ‘impact’ the pancreas. So I found articles, but conclusion seems to be there is not evidence of higher percent of new diabetes diagnosis for those treated with ESWL. But I already have diabetes, so that wasn’t my concern !!
I haven’t personally had any experience with ESWL, but my grandmother had T2 diabetes and developed a large kidney stone (perhaps related to T2, perhaps not). The doctors told us that a certain bacteria was causing her kidney stones, and that as long as she had even small kidney stones the bacteria would stick around (creating more and bigger stones). They recommended ESWL. She never underwent the procedure because a few other things went wrong around the same time.
I haven’t done much research into what the doctor’s said, but I don’t like the idea of the bacteria sticking around and creating more kidney stones. Looks like you’re doing the research!
Wishing you the best whatever you decide .
Thanks. I understand there are at least 3 types of stones. Unfortunately, when I left ER, they should have given me a strainer, but did not have any. When I saw the urologist a couple days later, then I got and strained urine from then on, till next visit. However, I never ‘caught’ the stone, although they will analyze what I returned in case there were very tiny particles caught in the strainer.
I hadn’t heard any reference to bacteria as cause, that’s interesting, and maybe less common.
Yes, she could have had an uncommon case of kidney stones. Hopefully you have a different one! She struggled a lot with UTIs as well, and I think that may have been related to the same bacteria.
Oh ouch! I’ve had 3… the 1st send me to ER (it was the biggest and I couldn’t keep anything down for 8 hours before I went) then the others just urgent care for zofran and pain meds. I’ve never had to have shock wave treatment, they were all <5mm. If its not going anywhere on its own, why bother— its so painful when they do move… The one I caught was just your run of the mill calcium oxalate stone.
Thank you Gary! I read this with rapt interest. My husband had multiple ESWL treatments almost 30 years ago (1990). Reading this took us on a trip down memory lane. He’s had 2 recurrences with large kidney stones about 20 years later and in the last 2 years developed T2 (it runs in his family, both his father and brother have it).
His is a very unique situation as he was born with a congenital issue affecting his large intestines (requiring surgery at birth when his ureter was inadvertently cut). The article provides insights we didn’t have at the time but given all the other issues it’s clear to us that ESWL was the right choice for him at the time.
My dad had ESWL, and my first research project as a graduate student was on this technique in my past life (when I was a bioengineer). Lithotripsy does do some damage to the kidneys; my dad developed high blood pressure after lithotripsy, likely because is altered his renal system.
I think that lithotripsy like all medical interventions should only be done when the side effects are something that you feel would be better than the way you are currently living. All medical procedures carry risks, and I have seen too many people with the side effect of the procedure, and it is always the last person in the world you want to get the side effect.
I totally agree, and am certainly leaning towards the do nothing at this point.
Scheduled a call with my primary just to talk it over, but thinking we will come to the same conclusion.
Thanks to all for the input and responses. Helps me sleep at night hearing different opinions and things I hadn’t thought of, and generally agreeing with my instincts.
The saga continues… I met with urologist and he says the right side big stone that sent me to the ER could still be there.
Last appt with PA was after an Xray, and she told me right side was cleared. The recommended ESWL was suggested for the left side where small stones were still in kidney (from ER CT-scan), although they did not appear on xray either. Right side larger stone was stuck trying to pass to bladder, and completely past kidney, per CT-scan.
The urologist ordered an ultrasound, to confirm if the larger right side stone was still present. This Dr also said my case definitely did not meet criteria for doing ESWL, and not sure why PA bought it up. He knew nothing of my case before my appt, yet he was who PA told me to schedule ESWL with, and I had thought she had conferred with him regarding my case. Poor assumption, bad advice. Don’t think I will be going back to that PA.
Anyway… more wait and see…
I asked why did they bother doing Xray, which had no value, (yet I have to pay for), and now I also have to pay for ultra sound. They said because insurance would likely deny ultrasound until it was proven that the xray was non-conclusive. Does this make sense??
It makes some sense, but it depends so heavily on your insurance that the only way to confirm it is to call you insurance beforehand and find out what is required prior to the tests. This is a pretty big pain, which is why most patients just pay the test fee and go about their business. However, if you have the time, it is always good to confirm this stuff if funds are tight.
This has happened to me anytime I’ve needed a more expensive scan of a joint, whether or not an x-ray was likely to pick up on anything, because my insurance requires it (and still sometimes refuses to cover an MRI…)
The xray cost is likely minimal, but the issue is the PA used the results to tell me stone had passed, and MD said it was not at all confirming that.
MD said he would not have ordered it in my case, and suggested the PA did based on insurance without giving me the option to check my plan. I left messages for PA which were never returned.
That’s why I was asking if others have had an xray for evidence of stone passing, or more common for ultrasound. Or no test at all, simply lack of symptoms, which I currently don’t have.
Sorry, I answered in a more general sense. I have (thankfully) not experienced kidney stones and am hoping to keep it that way, and the only intersection I had with it professionally was turning off internal defibrillators or changing the pacing settings for pacemakers.
.