PDA

View Full Version : Any one else dealing with kidney stones? Any helpful hints?



mtngirl
Nov. 26, 2009, 03:57 PM
I've passed 14 in the last 6 weeks. Most have been small (less than 3mm), but a couple have downed me with the pain. :mad: I find myself being so grouchy that I can barely stand myself.

The thing that annoys me most is the fact that I just had a checkup with my Urologist in late Sept and he declared me "clear" of all but one stone...and that one is one I've had for years and hasn't moved or changed since we discovered it.

On the plus side...I guess if I keep passing them, at least they aren't staying and growing larger. Any one have helpful hints? I've done everything my doctor has recommended - change in diet, lots of fluids etc.

Knothead
Nov. 26, 2009, 06:15 PM
14 in the last 6 weeks?!?!? Assuming you've had them analyzed at the lab...what kind are they? The "regular" calcium oxalate kind??? That sounds like quite a bit and not like one stone that broke into many little ones (or else your last checkup would have likely picked up on it). Do you get ultrasounds or CT scans (or both)? Sheesh...I've had 5 or 6...but over 20 years. I presume you've called your urologist? Believe me, I know the pain involved...14 in 6 weeks? I would be searching high and low for a specialist in kidney stones (aside from "just" being a urologist) for a discussion. My urologist promotes some supplement that's supposed to help, but I never bought into it. And even he isn't convinced, but many patients have had luck with it. I don't remember the name of it, but I'm sure it wouldn't be hard to find by some google searching.

MistyBlue
Nov. 26, 2009, 06:30 PM
That's a lotta stones!
I don't know a whole lot about stones. Had them once myself...had heard how painful they can be but I guess you don't understand it until you get one. Was vacuuming one day and out of nowhere I got a sharp pain so bad I fell over and was wondering who the hell shot me. :eek: Pain went away in about 10 minutes...came back a short while later and went to the doctors. A stone..good freaking lordy passing that made child birth seem like nothing! But it did pass on it's own in 24 hours without them having to "zap it smaller" it was a decent size but not enormous thank goodness.
So not sure what works best since mine passed in a short time and I haven't had a repeat. (knock on wood) But I can offer sympathy...I'd be crabby too if I had to deal with 14 of them! :no: Only thing I knew was hydrate seriously. And the doctor mentioned something about them being able to "zap" them with a laser for the bigger ones to make them break up into small pieces and pass more easily. Maybe ask about that? They said it was non-invasive.
I think there's something you can take too that will dissolve down certain types of stones. But I don't know much about that, maybe ask yoour doctor about that too?
Good luck with them.

mtngirl
Nov. 26, 2009, 08:12 PM
Yes, I have the calcium oxalate kind. Had to have surgery in May to cut up one that was blocking my kidney (it was 1.5cm). Mine are too hard for the sound wave lithotripsey...the sound waves just bounce off. Have to wait until the stones move to where they can be cut up by a laser.

For some reason, lately my stones have been playing hide and seek. That 1.5cm stone showed up in a CT scan. Had a stent put in immediately (because the stone had blocked my kidney and I was going "toxic" from it) to drain the kidney. A week later the doctors were going to cancel the laser surgery because they couldn't find the stone. It didn't show up on x-rays or CT scan. I knew I hadn't passed anything and insisted they do the procedure anyway. Good thing they did...stone was definitely still there.

I was on a citric acid type supplement for a year...but didn't find that it made any difference.

Maybe I should advertise myself as a "human quarry".

JA
Nov. 26, 2009, 09:03 PM
I have suffered from kidney stones for years. Mine are inherited
from my father's side of the family and knowing why i get them has been a big help in a treatment protocol. You mentioned your urologist but have you seen a kidney stone specialist? Often the bigger teaching hospitals like the Hospital of the University of Pennsylvania have a stone evaluation center. Has your urologist had you submit a 24 hour urine sample to help determine the cause of the stones? It was very helpful in both mine and my father's cases.

Also have you tried a potassium supplement? I never found the following the prescribed diet did any good, got just as many stone on it as not on it!

I my case I found that the placement of a stent actually causes more pain, subsequent infections and stones. My doctor no longer uses them when I have a stone that will not pass without surgical intervention (too hard and big to break up)

Dark beer really helps them pass, believe it or not.

The only other advice i can give besides seeing a stone specialist and drinking dark beer is cranberries seem to help some. I hope your pass soon and you can find out why your body keeps producing so many. Seek out a specialist from a large teaching hospital in your area. They really are better than just a plain old urologist. Also if you are infertility and specialized OBGYN practices that often have urologists that specialize in treating women. It may help.

Good luck! i hope you are free from pain soon

mtngirl
Nov. 26, 2009, 11:14 PM
JA: Thanks! I honestly never thought about urologists specializing in kidney stones. I should have. After all, orthopaedics often specialize in one area...such as hips or shoulders. That's something I need to look into more closely.

I am definitely limited in some ways due to finances and insurance (at least I do have some). To my knowledge the closest teaching hospital to me would be Bowman-Gray in Winston-Salem, NC. That's only about 3 hours away, so that's another possibility I should investigate.

I have been told that there are at least two major contributing factors in my case: 1) the area I live in is known as the "stone belt" and has one of the highest rates of kidney stones in the nation and 2) I had gastric bypass 24 years ago...and that's suppose to make you more prone to developing kidney stones. :confused: Not sure if that statement's true or just some palative thrown out to me. I've only seen 4 different urologists and they all seem to have different ideas.

And because of that gastric bypass I cannot drink alcohol. Dark beer has been recommended (it's a diuretic after all) on several occasions...unfortunately I cannot tolerate any alcohol. Within five minutes of drinking any it comes right back up. :sigh:

Thanks for the suggestions. Definitely worth more thought.

4Martini
Nov. 26, 2009, 11:25 PM
I would try and get an consult with a Nephrologist (Kidney doc.)

I have had some issues with my Kidney's while pregnant and luckily one of my friends is a PA who works on mostly Kidney transplants. He asked the head nephrologist about some of my tests and I got way more answers about my kidneys than I had from my OB or anyone else. I even got some good tips on dealing with the pain. As well as good reassurances that my problems should go away when the baby comes (I'm still waiting on that though- but better than the radiologist who thought I was in Kidney failure.)

Good Luck!

Linny
Nov. 26, 2009, 11:34 PM
I had one and it was the worst pain of my life apart from childbirth. At least I knew that eventually the child was coming out. I was bedridden for days and it was weeks before I felt normal. I cannot imagine having that many.
I was told to drink water with lemon juice as the citrates in the juice help prevent them from forming.

I would see a nephrologist. If you are forming that many stones, you may have some further issues. Someone out there must have an answer. Stones are too painful to just accept the diagnosis of one doctor.

JanM
Nov. 26, 2009, 11:57 PM
A woman I worked with many years ago had five children and she then had a couple of stones-she swore that childbirth was nothing but the damn stones almost killed her.

Don Imus who was a world-class drunk and doper for years reformed and now has a totally vegetarian lifestyle based heavily on the kale, spinach and such vegetables. He was always bragging on how healthy he was getting from his lifestyle and then he got a kidney stone or two. Yes, it turned out the healthy lifestyle was the source of the stones. I guess we just can't win.

KellyS
Nov. 27, 2009, 07:35 AM
I don't really have any helpful advice but I can tell you I can feel your pain.

I've had a terrible time with stones for the past 9 years...with 10 surgeries to have them removed (mainly from the left kidney). They are the garden variety calcium oxalate stones, but other than being told to drink a lot of water and stay away from tea, etc, there isn't much else I can do.

To complicate matters, in 2007 I was diagnosed with endometriosis in the area around the left ureter and kidney, and had a laparoscopy with retriperitoneal exploration (they explored that area and removed an adhesion).

Four months after that surgery I started having pain in my left side...my local urologist told me there was no way it was stones, but a CT scan showed that both kidneys were packed with them. I ended up having 2 surgeries done at Johns Hopkins in Jan 08...turned out that the ureters are so narrow that the stones couldn't pass...they placed stents to dilate the ureters so they could remove them all. Left-sided pain went away after that.

Last February similar pain started. The next 5 months were a nightmare as no doctor wanted to deal with me...urologists said it was endo, reproductive specialists said it was kidney. Had surgery to look inside the left kidney in April and was in such excruciating pain afterwards that I was back in the ER in a few hours and then admitted to the hospital for 2 days.

Right there and then I knew it was kidney pain. I was able to coordinate with a reproductive specialist and urologic surgeon at Johns Hopkins. The loose hypothesis was that all the surgeries done to the left kidney/left side had left the nerves hypersenstitive; any stimulus resulted in kidney-stone like pain.

The surgeon ended up doing surgery at the end of May to "denerve" the left kidney; apparently it's a surgery that hasn't been done in a long time and there wasn't a huge chance for success, but I've been doing great since then! Such a drastic difference in my life. There were days last spring where the pain was so horrible (and that was while I was on a fentanyl patch) that I couldn't even fathom living life that way anymore.

So 13 surgeries total related to my kidneys...so many ER visits that my local hospital dubbed me the frequest flyer...and I topped things off by fainting in the barn 3 weeks after my last surgery, hitting my head badly, and spendt 2 days in a neuro CCU. It has so not been my year health-wise!

Have no idea why I bored you all with that other than to say that kidney stones suck. ;) And to say that the urology team at Johns Hopkins rocks!

tullio
Nov. 27, 2009, 10:10 AM
Oh, you poor thing! I don't have any great ideas... had my first experience with kidney stones this spring and it was terrible. I only had one but was told it was "abnormally large" - the pain was incredible.

I can't imagine what you must be dealing with - I second the suggestion to see a new doctor and get some second opinions. I think the recommendation to find a doctor who specializes in stones is a good one. There must be something else that you can try... don't give up!