kidney stone advice??

[bandgsmama]

with the wisdom on this board, i thought someone might have some good advice for me. for about a year, i've had kidney stones at an unbearable rate (4-5 every 2 months). in december i had some removed & stent put in (which was more unbearable than the stones themselves). all my urologist said was to drink more fluids. still getting them. right now, i have 4 on my rh side. my urologist just wants to do the procedure she did in december & i said no. i tried a coke-aspargus cleanse & it didn't do the trick. right now i'm waiting on a referral for another dr. it's starting to get pretty old & didn't know if anyone here has had similar experiences with some advice. thanks!

[niccig]

Has your parathyroid been checked?
A friend had kidney stones as late teen, unusual for her age and it was parathyroid disease. She had surgery to remove the parathyroid - it is similar to thyroid surgery as parathyroid is by the throyid. I had thyroid surgery, so we have matching scars on our necks- small, can barely see the scar.

[Fairy]

You have to have the stent, hon, I'm sorry. Unles they're small enough to be broken down by the sound wave therapy, which mine were not. But once they hit 5mm, you're iffy on that, and at 6mm on up, it's stent time. My stent went just fine. It was uncomfy, but nothing -- NOTHING -- compared to that pain of the stones putting pressure on the ureter. Was your procedure not done under a MAC or general? I mean, it had to be, right? I know it's a pain in the ass (no pun intended) to do the 3 steps of this thing, but it's pretty foolproof for removing them far as I've researched.

Now, the recurrence I cannot comemnt on,a nd I'm so very sorry. I know that fear. Having a stone was up there as far as terrible experiences in my life, and I've had two scares since then where I was SURE I had a new one, and I did not. My urologist thinks i'm a hypochondriac. But for a long time I did everything I could to avoid stone-causing foods. Are you following that diet? Between that and keeping your kidneys as wet as possible, that's the standard, but it also depends on the type of stone you have. Do you know the classification for your stone? You should. Find out if you do not.

I'm so sorry. I know. I truly do. (((Hugs)))

[bandgsmama]

thank you both for your insight & hugs! you both rock!!
i am excited about the information i looked up on parathyroid disease! when i went to a parathyroid website, i honestly could say yes to every symptom they listed & i have had radioactive iodine treatment in the past (prior to having any stones). i am going to ask my family dr. to have my calcium checked asap!

for my stone removal, i was under general & the stent was honestly worse than the pain of the kidney stones. i had it in for a week & couldn't move without getting sick. the urologist said this was normal. after a 24hr. urinalisys & stone review, the only advice from my urologist was "try & drink more fluids." (i drink a lot of fluids already! i wasn't told about a diet, but will look into it.

i've had stones off & on for 13 years now & they used seem to occur onlyduring "big" events (i.e. school finals, right before vacations, on vacations, etc). now, they are just all the time & it's hard to bear. (i went in 2 weeks ago to check on a stone on my left side & 4-5 new ones had developed on my right - crazy!) ibuprofen just doesn't mask the pain enough, but i have to be able to function to drive & take care of my kiddos!

thank you again for the much needed hope!:hug::)

[niccig]

I hope you get some answers.
If it parathyroid related, a few of us here have had thyroid surgery and can give advice on that recovery.

I would be asking exactly what your blood levels are and check that against parathyroid site. I was undiagnised with thyroid for 3 years, so it helps to be aware of what "normal" is, and go see endocrinologist if current dr. Dismisses concerns. A friend finally saw my endo. And found out she had autoimmune Hashimotos and her regular dr. Never ran that blood test.

[dec756]

man all i know is that the stent was close to as bad as the stones...gosh i wish i hadnt ever done that. i nearly fainted when they took it out. i wish you luck....i would suggest looking for a doc with a good rep and go from there

[Melaine]

My dad has had some relief from colonics. I hope you find a solution soon, that sounds awful!

[ohsara430]

My mom had them and I still remember how much pain she was in. She ended up eliminating some foods from her diet which has really helped her, I think dark colored soda was one of the things (Coke, Pepsi, Root Beer, etc). Definitely something to look into. Sorry I don't know much else she's very private about her health even with family but gosh I hope you start to feel better.

[bandgsmama]

thank you all for your kind words & advice. it is all very helpful! what would i do without this board?! love it!

[artvandalay]

Oh gosh, I don't have any advice but I feel so bad for you. I have them, too (but my situation is not as severe as yours).

I've only passed one, but when they did a CT they found 3 more that are still stuck up in my kidneys. I feel like a time bomb.... like one day when I least expect one of the stones is going to make a break for it... and the fear of going through that pain again is terrible. Whenever I have any little twitch of pain in my back, I start to panic that I'm passing one.

[Sillygirl]

Ask your urologist for a referral to a nephrologist, who can analyze your urine chemistry and identify your specific risk factors to modify.

[Fairy]

The thing is that water really is the best defense against stones. Constant flushing of the particulate. Once you get a sizeable stone, then the water makes you feel better by floating the stone more, but it's not going to pass one that's too large to fit thru the ureter. And BTW, motrin? Yeah, nothign short of an opiate helped me until the stone was OUT. And once it was out, the pain was 100% gone. Like a switch.

Most stones are calcium oxalate in makeup. You need to find out what kind yours was. And then avoid the foods that are high in oxalates. Which, of coruse, are the healthiest foods on earth, so that's a serious problem for me. This website is helpful. No clue who runs it, but the info is good --> http://rogerbaxter.com/KidneyStone/Pages/KidneyStone_4.shtml. Those foods include dark green leavy vegetables like spinach, all berries, tea (serious problem for me), dairy, and dark pop (cuz they come from a high oxalate bean). I've been courting the devil, here, by eating those thigns, anyway, but I have to lose this weight, and my alternatives without these foods are literally nothing. So, ya do what ya gotta do, whatever that is. But tehse foods are baaaad for oxalate stones.

As for stents, I am stunned at the folks saying they had such a hard time. It was uncomfortable for sure, and I leaned alot mroe than sat straight. But the removal was no biggie. They should numb you with a a local that is an ointment in the urethreal area, and then once you're all numbed up, they just pull it out, and it's no biggie. If you're having a bad time, I wonder if there's soemthing fishy going on, cuz I'm telling you, pain should not be part of this.

[trcy]

I don't have any advice, but want to send you hugs :hug: How aweful you are going through this. I had a amall stone that passed on its one years ago and that was horriblly painful. I can't imagine your situation...good luck!

[jiggaman]

If you're making that many stones have you been tested for Medullary Sponge Kidney? That's the only reason I've ever heard of for people making so many stones.

I have a urologist friend who said to drink lemonade. It doesn't shrink existing stones but helps prevent the formation of new stones.

Kidney stones suck, best wishes going out to you.

[Sillygirl]

There are in fact many reasons to have multiple stones. I get that people are trying to be helpful tossing out specific diagnoses, but it would be much better to have a comprehensive analysis instead of chasing down each one. And your urologist should have either done the workup or referred you already, given your age and the frequency of your attacks.

[lorinick]

I have no advice. I have kidney stone that are they but don't bother me. They have been there for many years. I had one attach the stone passed on it's own in the ER. I know when I was trying to get pregnant I was told during each ultra sound that I had stones. That has been 4 year ago. I know one day I'll have problems but so far nothing. I've never been told anything about a diet.

The stent sounds horrid. I don't think I would do that. :grouphug:

[caleymama]

Ugh! I feel for you, I really do. I've had pain from some I have for a year now, but they have not passed.

I did have one pass a few years ago and it was AWFUL. I received pain meds, fluids, and a CT scan at the ER but did not pass it until after going home. The urologist I saw at the time to follow up had the stone analyzed and gave me some dietary recommendations to hopefully ward off future stones. The list was similar to the one Fairy mentioned - his included iced tea, dark colas, spinach, asparagus, rhubarb, peanuts, and chocolate. He said drinking lemondade or water with lemon could help too. He did test me for hyper parathyroidism because I was on a medication that had the potential to raise blood calcium levels, but that turned out to not be an issue. I pushed for the test because I had had a CT scan a year earlier due to an ovarian cyst and there were not stones at that time.

I was pain free for a few years until last winter/spring. Went to a new urologist (I'd moved) and had a CT scan done - turns out there was another stone. The urologist has been monitoring me ever since and he sent me home after my CT scan follow up with a kidney stone "kit" to use if I thought I was passing the stone. It included an Rx for pain meds to have on hand (Tramadol), a strainer, and some samples of Rapaflo which he said could make passing the stone easier. He had me complete a "24 Hour Voiding Diary" and also wanted me to do a collection for Litholink (http://www.litholink.com/gateway.aspx?page=PatientLitholinkStone). Just last week I did the urine collection for Litholink and FedExed it to their lab. I should know more after I meet with the urologist next week.

I can't say for sure, but it seems like there is more diagnostic stuff that could be done to figure out why you are forming these stones, how to manage the stones you are getting, and how to prevent future stones if possible. Good luck!

[bandgsmama]

ladies,

i honestly do appreciate everyone's advice. my urologist isn't the best i don't think (why my stent hurt worse than having the stones & childbirth). she did have me do the 24 hour urine test that was fedex'ed to a lab. only directions i was given was more & more fluids. i feel like i'm sloshing around most times!
the parathyroidism has really caught my attention after reading about it. i can check yes to all the symptoms & have had radioactive iodine treatment in the past, so i look forward to talking to my dr. wednesday about this. he is also getting me referrals for another urologist & other needed specialists. thanks for your prayers & good thoughts!! when we get to the bottom of this, i will let ya all know!!

[Fairy]

Bandgs, it sounds like you're on the road to the right destination, getting another referral, looking into the parathyroaid possibility, etc. Best of luck to you, and I just wanted to ...


There are in fact many reasons to have multiple stones. I get that people are trying to be helpful tossing out specific diagnoses, but it would be much better to have a comprehensive analysis instead of chasing down each one. And your urologist should have either done the workup or referred you already, given your age and the frequency of your attacks.

... :yeahthat: one more time cuz it's the best advice so far, and that includes my own. Who KNOWS what's goin' on, you've gotta get a proper analysis with a doctor that is, perhaps, better than this one in your estimation, and get yourself well, you poor thing! And it sounds like that's exactly what you're doing, so there's a light there at the end of that tunnel. And please know that the stent shouldn't have been worse than the stones, it just shouldn't have. Come back and update, and I'm sending mojo!

-- Fairy