[lioness]

I just had my 6th treatment of bilateral ureteroscopy w/lasertripsy where they just basketed the 3mm stone, when analyzed was new component starting out as oaxalate crystal then predominantly hydroxylapatite relating to infection. I had a f/u CT on 11/17 which shows completely stone free in the left side even in the tissue...but there is a piece of calcification in the right in the tissue of the kidney where they cant treat it...that's great but I still have recurring UTI's Just had my postop 11/21 where my uro is mystified by my flank pain I am taking Vicodin like Skittles. The burning isnt when I am urinating it is when I am sitting, standing or walking. I saw the CT KUB on the computer..have all my reports. I have an infectious disease specialist ordering ua's & uc's through 5/09. Right before my last treatment I found out I now have a resistant strain of E Coli (ESBL) and will be on and off a PIIC line with home IV antibiotics. I have an IV pole at home. This is disrupting my life...I need to have a normal life without talking to my uro til I am blue in the face...it cant be all HYGIENIC...

My uro just ordered a VCUG test for reflux but he still thinks I have voiding problems...Well if I am not going that much I am not voiding that much...I have tried lemons and lime juice in water..he said this is the last test he can do it is a all about personal hygiene and that some patients are prone to UTIs and the lining of the urinary tract has bacterial growth since I have had so many infections..ever since I kept getting UTI's I have been so cautious in personal hygiene..I was a good water drinker until I had to increase it in the first ESWL and then finally my new uro said my stones won't pass... There have been 5 uros on my case. My only saving grace is that my new uro is the doctor in charge actually doing the treatments and I am actually talking to him and making appt's with him, something that was disappointing with my original surgeon who took them out in the flank. He didnt tell me or talk to me even about my long term prognosis since the one year residents he had working with him didnt know my history that well...he was one of those surgeons paid to cut and cut only and in his own practice out of my HMO coverage.

Had I been told in the beginning that urology didnt do any f/u urine tests...all they did was put me on low dose antibiotice but wouldnt they think to do f/u urine tests with a patient with staghorn stones who had the urease splitting bacteria that only causes the staghorn formation well duh... I have basically researched my own medical condition...I wouldnt be in this mess...

My uro wants me back in a month...what's the point? the reflux test will be negative and he will say wipe front to back, blah blah blah... and I am tired of peeing in a cup every two weeks...If I have UTI symptoms I dont have an infection. If I don't have UTI symptoms I have an infection...

If you read my earlier posts all my original stones were 100% infectious taken out in the flank bilaterally in 6/06. I was lucky to have a good uro surgeon who specialized in PCNL. The first metabolic doctor did no workup I knew about the high calcium but didnt think I would have to tell a uro that...I am still on Potassium pills and thiazides for the high calcium...

My father asked me if I wanted to go to the Mayo Clinic...I said what's the point...I am giving up hope on this UTI...I can't take it any more...

I was in tears when I came home last night...

sorry to vent and I know there are stone sufferers for years worse off than me and my hats are off to the people who pass their stones normally in pain but better than having urological intervention but I have never had a health problem until they found the stones, too late, they had to be surgically removed in the flank and all infectious which caused by kidney infections in the first place.

[nails_100]

Sometimes venting is the only way to survive and at least here there are ppl who understand your frustration. So the ECOLI thing- not always about hygiene, shame on him for making you feel that way, everyone has bacteria through out their system I don't care if you always wipe front to back you can still get ECOLI bacteria. However on a personal note- do you wear thong underwear believe it or not those little thing are good for passing the ecoli from back to front.
All the VCUG is going to show is if your urine backs up into ureters which would cause infection. My daughter (who did not wear thongs) did not have reflux but did have reoccurring pyelo. All the VCUG's were negative for her. After her second cystoscopy they found she had "bumps" on the bottom of ureters ( Hutch diverticulum). Bacteria in her system- ecoli- would cling to these bumps an travel up ureters into kidneys. And then she got Pyelo took 4 years to diagnose that.
Your Dad may have a point.We live in Rhode Island- started at small hospital, then went to "the best" (LOL), then Boston Children's, and now we are at Lahey Clinic (she has new issues now). Layhey has been great- its a hike 2 hours 1 way so 4 hours round trip and we go just about every week. But they are seeing us!!!!!! Nephrologist first day said "I'm not sure what this is just yet but we will figure it out!" You all know how great it felt to hear that. Rather than "your anatomically fine" or "the test was negative, that's a good thing", "you shouldn't be having this much pain".......
So if not to far...maybe try Mayo

[lioness]

Thank you for responding...

I am sorry to hear about your daughter I am glad she is getting the help she needs with a nephrologist...My ID doctor tried to refer me out to one...but they turned me down since my Creatinine is normal...

The problem was in the beginning was that I didnt get a metabolic workup and no stone prevention pills until a year later... I have hypercalcuiria...and they didnt do any f/u urine tests, just put me on low dose antibiotics...I have basically researched my own medical condition...knowing that calcium is the predominant mineral in stones...didnt think I would have to tell my uro that...

I do get low grade fevers with my infections...My fluid consumption is getting worse...this is the only uro who hasnt told me to stay hydrated...which I find interesting...

My new stones are still infection related but he said he isnt concerned about that...hard to believe that...hydroxylapatite is from infections my uro said.

I just had the VCUG test... not fun...that will probably be normal...

I do wear nylon underwear with cotton crotch..I've been told to wear cotton underwear so it can breathe...The last time I talked to my uro he asked if I wanted a second opinion with his boss the Chief of Urology...I told him all I want is this UTI to go away...and find out why I keep getting infections...how difficult can this be...I practically wear scrubs and rubber gloves when I shower LOL :).

I live in California so the nearest Mayo Clinic is in Scottsdale, AZ I have been thinking about it...or even John Hopkins...I dont know where the nearest location is...

I drive 4 hours into Los Angeles... even for a f/u app't. I didnt have much luck with my local HMO my referring urologist gave me the wrong antibiotics and the assistant surgeon at my first PCNL surgery confirmed it...My local HMO doctors didnt read the sensitivity tests so I was given the wrong antibiotics to the bacteria and the stones were found too late... My uro has done everything I have asked him to...He knows I am not happy...

I am stone free in the collecting system just a small calcification in the right kidney tissue where they can't treat...

[nails_100]

We saw 3 Urologists before going the Nephrologist way. Aren't Nephrologists supposed to be the "stone specialists", My daughter's creatine and bun are fine...of course her kidneys "work" normal.

The last Urologist we saw told us she was fine- all tests negative, "this is good news", she is anotomicaly great. So I asked if she is so fine then why does she pass protein and debris and vomit almost every night? His answer was "thats curious". Yep, CURIOUS. And that was his diagnosis. After that (I seem to research as much as you) I found on HIS hospitals web site that they had a stone clinic. And from that page I found my daughter is now pre-disposed to making stones due to the surgery HE performed on her 6 years ago. How come he didn't know about that or the stone clinic...CURIOUS. We never went to stone clinic because by that time I was done with Boston Children's, fed up, and we moved on to Lahey Clinic where we have been treated well. So my question to you is are there any "stone clinics" near you? I would check it out on web since 3 Urologists and 1 Nephrologist never mentioned it to me (even when program was in same hospital). The stone clinic at Boston Childrens seemed to have a team of both Urologists and Nephrologist sounds like a logical program.

So my daughter had low citrate levels and oxalate crystals in one of her 24 hour urines. Last week one of her stones came back as "brushite". Her stones are tiny, She passes those and "debris" (looks like black pepper" almost nightly. Even though they are tiny they cause a great deal of pain. She was atarted on the potassium citrate- 5mg, this week we have uped it to 10 mg. How much are you on, does it make you sick, how long have you been on it and does it seem like it has helped? I also read somewhere that a glass of OJ is actually better than the lemon juice ...trying it.
Deb

[lioness]

i have researched stone clinics online and the nearest one is an hour away...the first metabolic doctor works there and would recognize me...he did not do a workup at all and had a poor bedside manner...i did get my records together and had my dad's uro whom is very credible look at my OR reports, labs, CT KUB reports, etc., and he said they are doing the right thing...so at some time i will have to swallow my pride and just realize that i am stuck with stones and recurring UTI's and peeing in a cup for the rest of my life...

I thought nephrologists were stone specialists too since the stones do form in the kidney and infections do start in the kidney going down to the bladder..but apparently my local nephrology dept waits until your creatinine and BUN go way up and your GFR drops dramatically and you're on dialysis or the transplant list...

My uro just says some people pass their stones some people dont so lasertripsy or ESWL isnt the treatment for me...i told him...they have to keep basketing my stones...

I take 500mg of citrate (6 pills a day) with 2 thiazides..my other problem is that there is a lot of family drauma i dont live at home any more but my brother is crazy and dangerous and the drauma will be escalating in the coming weeks...the stone pills i feel dont do much for me i am not in as much pain when i dont take them (not on purpose) with flank pain or burning...with the family drauma and stress sometimes i cant remember if i take them or not...something i will be telling my doctor when he calls with the results of the VCUG test...

What kind of surgery did your daughter have? Being that my father is an attorney he is very concerned and wanted to come with me on my appt's but i wanted to do this on my own...but my parents met my uro at the last treatment and liked him...i do too i wish he could just waive a magic wand and take kidney stones off as my diagnosis as well as find out the etiology of the UTI. He hasnt said anything about the bilateral cortical scarring which showed up on my urogram last October...or if it has healed down there due to my ongoing infections...apparently there were adhesions in the left kidney during my last treatment...didnt mention that in my postop visit...

Are the brushite stones like bricks? i think that is what i have read... I am sorry that your daughter is in pain...when she passes them...

I find it hard to believe my uro isnt concerned about the still infected related component in my new stones that are forming..hydroxylapatite...i read in a book and i bought four 3 about kidney stones and 2 about renal pathophysiology too in depth for me...in the kidney stones book i read that apatite is an unusual stone forming process something this stone clinic hasnt told me yet i am tempted to bring my book with me on my next appt LOL and highlight the portions for him...but seriously this uro has a good bedside manner and has done everything i have asked...and i dont want to make him upset with me but shucky darns find a cure for this infection isnt that what urologists or nephrologists do? My uro mentioned nothing about a nephrologist yet?

I do drink OJ, as well as lime juice and lemonade. Dont drink much soda...my uro said he would do a 24h urine test in six mos and maybe i will be off the stone pills...that is why i have to tell him about the stress in my life...mind body soul healing...if you have any suggestions let me know...or to bring up to my uro when i talk to him next...i appreciate your input because it sounds like what i have been going through...

[nails_100]

So, stones are pretty new to us. She has only been passing them for 3 months. But continuously for 3 months. She has had 3 or 4 days of no stones here and there, otherwise it is every night stones or debris and the vomiting. We have tried the peppermint tea that you suggested 2 months ago replying to a different post :) . Nothing works not even compazine or zofran ( which is $26 a pill and our insurance wont pay). From what I understand, Brushite stones are very rare. They are made up of a protenacious material ( i guess thats why the protein debris). They are also very "spongy" - the lithotripsy will not break them up so we have to be careful they don't get bigger. She is now on 2 of the potassium citrate but tomorrow we will up it to 3 pills. She seems to be tollerating them. I did call the doctor yesterday because she has been on the meds 2 weeks and no change- he said that the pills will only prevent new stone, and keep existing stones from getting bigger, but she will have to pass what ever is left. We dont know what is left- they are tiny so they don't show well on ultra sound. He also said it could take "some time" - I'm not sure how long "some time" is. Also what is ESWL and basketing stones?

Now kidney infections I know more about. Daughter had infections undiagnosed from age 8-12. Had every diagnostic test available- several times. Usualy pyelo. NOT hygine related by the way (sticking tounge out at your doctor :) ) She would be hospitalized about 3 times a year for a week at a time for IV antibiotics to fix her. She even got these infections while taking profolactive antibiotics. !st Urologist saw bumps on ureters during cystoscopy but didn't want to do surgery for something so small. Wound up at Boston Children's for second opinion that Urologint new exactly that it was "Hutch Diverticulum" -bacteria would cling to bumps and go into kidneys. So her surgery wound up being a Bilateral ureter reimplantation and repaired the bladder wall (looked like swiss cheese from all the infections)


So when you mention your scar tissue- scar tissue and adhesions (same thing) they do NOT heal. It is caused from infection. The more infections the more scar tissue. NOT something to mess around with. Doctor should be concerned. The more scar tissue in the kidney the less function. It can lead to loss of kidney funtion. Daughter loaded w/ scar tissue-1 kidney functions at 35% other at 55%. However her bun , creatine...all good. BUT for her, scar tissue has now led to hypertention. At 16 years old she was diagnosed w/ high blood presure and put on meds- thats how we got to see our first Nephrologist.


Well I just took a sec to try to find a good "scar tissue" web site and it looks as though not only infects can cause scarring but stones can as well. Hmmm more reading for both of us I googled "kidney scar tissue"

Sorry to hear about the "drama" you dont need that extra crap right now. You should let you dad go on Doctor visits with you. Always good to have an extra set of ears and someone to think of questions you may have missed.

[honey11]

I too have infection stone type and have been dealing with this for many years. If you read statistics, regardless of type of stone; if you are a stone-maker, we will be dealing with this until a real preventitive approach is discovered if those in the traditional medicine field decide to make an attempt to figure it out. I have had every kind of stone surgery/procedure there is. My concern more than having stones is the damage done to the kidney with repetitive shock wave treatment, scarring, etc. I will be having another lithotripsy session next week bilaterally.

However, I have found an excellent acupuncturist who has started to treat me holistically - with not only accupuncture but natural herbs. She has also made recommendations regarding diet, which I believe is a major contributor to kidney stones (sugar and salt are not good for stone producers for example; including infection stones). My acupuncturist is Chinese and comes from a family of herbalists and accupuncturists. They are not expensive, and do an interesting evaluation about you; your diet, your pulse, your tongue, how you feel (hot, cold), your emotional status, etc. All things that help them understand what make you tick and why you could be producing stone. And by the way, accupuncture is not painful and has been used successfully for over 3,000 years so it must have validity.

There is alot more to it - but would take too long to document. She has also cured me of sciatica which I had for over two years; went to multiple chiropractors without success, and in a matter of two treatments, I was 100% cured - no pain whatsoever. I have done my research and have also experienced success.

I do not believe anymore in antibiotics as your body becomes immune to them so they really do no good in the long run; as well as they are "toxic", however, I will follow the traditional recommendations for the last time, and will be going full force on a regimin to prevent the stones, again via natural medicine. Not one doctor in all my years ever made any recommendations to prevent stone. Why, because they don't know the answer! More drugs, more antibiotics, more surgery, more procedures. Let's face it - thats how they make money. The only thing I was told was "drink 8 glasses of water a day". Wow - as if I couldn't figure that out myself...They treat the immediate problem with surgery but then good luck in them really trying to prevent the problem.

Don't give up - you sound very educated about your condition. So far, in taking the herbs in tea form, my urine never looked better and I feel overall more healthy and cleansed. I am changing my diet as well, and all I can hope for is that it works and I don't produce infectious stone anymore.

I have decided that if I continue down this over 20 year road of traditional medicine relative to stones, I will deal with it for the rest of my life. I have too been to the very best doctors; professors of urology; kidney stone specialists; you name it. And here I am, 3 years post PCNL x 6 procedures with multiple small infectious stone. I can't imagine how going holistic can hurt me.

I wish you well.

[lioness]

ESWL is extracorporal shockwave lithotripsy. They put you on a table with a water cushion can be done wet or dry depending on the composition of the stone and use fluoroscopy imaging to find the stones so they can penetrate and crush them with a shock wave machine...then you are supposed to pass the fragments...sometimes they have to use ureteral or urethral stents so the fragments wont block...this started in Europe somewhere and came to the US in the 1980's before it was just getting the stones in the flank which happened to me with my first surgery...a procedure i do not want to go through again...had luck there with a good surgeon who specialized in this type of surgery...however he left a year ago and is in his own private practice...

Basketing the stones is when they do ureteroscopy and use an IV pyelogram to see the stone since my stones never pass lasertripsy or ESWL isnt the right treatment...there are several different kinds of baskets they use depending on the size of the stone and composition...if the stone is soft then the stone just drops into the basket which is what has happened with my last two treatments... my uro knows my stones never pass so basketing the stone is the only treatment he can do for now...

The bumps in your daughter's ureters...that sounds almost like what my uro said to me although my ureters are normal that the bacteria just sticks to the lining of the urinrary tract...since infections and urine form in the kidney...

I am very concerned about the scar tissue...i will bring it up the next time i talk to him...in my last OR report they diagnosed be with cystitis cystica something that was new to me and never heard of my uro said that was just an inflammed bladder...well i never saw that on my postop diagnosis until my last treatment...

I also get mad when a uro says wipe front to back...i told him what I have done it cant be all hygienic..it comes from your intestines and it is from what you eat... my ID doctor will always think it is the stones when they drop down into the collecting system since urology hasnt come up with a reason why...I do my own IV antibiotics at home which takes about two hours since I have to have sterile condition to get the IV drip ready...and i cant get the PIIC line wet...makes sense...I can give myself an infection... when i have the resistant strain of E Coli ...my infections started getting more frequent about five to six years ago and nobody referred me to an ID doctor which is what it says on the urine culture or a urologist until it was too late.

Cranberry juice/pills do nothing for me...i have Vicodin for the flank pain...and I deal with the burning by just walking it off...but i grimace through it...i do notice when i dont take my stone pills not on purpose that i dont have any pain and since i wasnt diagnosed until a year after my 3rd treatment with the high urinary calcium i still feel no harm no fowl...

After my 3rd treatment they put me on low dose prophylactic antibiotics where these antibiotics became resistent to the bacteria without any f/u urine tests and they didnt do a workup on the 24h urine which i thought was shocking...they were treating my case as just infectious stones but you dont have to have an MD to realize that a stone patient who had 100% infectious stones needs f/u urine tests to check to see if you have the urease splitting bacteria. I have also researched the bacteria i get and i have had three. There are certain bacteria that cause the infectious stone material not E Coli thank goodness...which can grow fast and destroy the entire kidney...my stone composition is still infectious related...something that is phasing my uro...he said he wasnt worried about that just my pain well i said i am worried...

I wish I had a nephrologist on my case...will mention that to my uro when i talk to him...since he is mystified about the UTI...

I have hypertension too only when I have to go in for treatment or for a doctor's visit...i have that "white coat" hypertension...i never thought how important my kidneys were until i was diagnosed two years ago. My GFR goes from 49 to 60...my left is worse than my right kidney.

Sounds like your daughter was treated the same way i was...not being diagnosed until the condition gets worse...and too late...my thoughts and prayers are with you and your daughter...

My urine is now acidic and concentrated which is not good for the stone former which never happens ...I keep telling my uro that my urine looks like 20/50 motor oil...since my uro hasnt mentioned fluids the only one who hasnt mentioned fluids and there has been 5 including my current uro on my case who is in charge of my case...i wont worry i do have a low output something that he hasnt been concerned about...another shocker...i have also read that females have a lower urinary output than men which predisposes us to making stones...and of course infections...i have really tried to drink the fluids used to be a 64 oz a day drinker but this year i just cant stomach it and since it doesnt pass the stones or bacteria...and i feel worse when i guzzle the water...which i find strange but is true...

[lioness]

I agree in everything you say... funny you should mention a holistic doctor...my friend suggested that to me...and i was seriously considering it...what could it hurt...

i have made suggestions to my doctors not they make suggestions to me...

do you still get infections? do your stones cause the infections? do your still have the triple phosphate stone material? i dont anymore did in January which were residual from my original composition.

I have done so much research...it is very frustrating and then the infectious stones can recur and if I keep getting infections well as you know can start building up again...

it is strange because my kidney function, creatnine, BUN is normal. My GFR goes from 49 - 60 my left is worse than my right...i just dont want to be on dialysis or transplant list...i need my kidneys didnt realize how important they were or what they did until i had to basically research my own medical condition...

i was diagnosed with kidney stones two years ago with a safari trip planned 6 weeks later found a doctor who opened up his schedule and did two kidneys at once...i have said this and that about him but seriously without him i wouldnt have my kidneys...800 safari pictures later wasnt in pain in Africa...but had to face my first ESWL and there were stones everywhere in the renal pelvis
which shocked my uros...

and it was obvious i got abused with antibiotics with my local HMO doctors because i have to have a PIIC line every other month and an IV pole at home...and i am getting ready to tell my infectious disease doctor no more antibiotics...what's the point...since i have a resistent strain of E Coli i feel like a petre dish lol...my stones were found too late my PCNL was in 6/06 then 5 treatments later...they havent mentioned anything about my diet i have changed my diet on my own since my stones are now oaxalate w/hydroxylapatite, as you know still infectious related...and this uro hasnt said anything about fluids...

my first surgeon who did the PCNL was the regional stone specialist so i felt i was getting good care it was the after treatment of not getting any f/u urine tests to make sure i didnt have the urease
splitting bacteria...and he referred me to his assistants who didnt know my history very well...and i didnt get to talk to my surgeon in charge of my case about my prognosis or treatment modalities.

i am lucky that I havent gotten the staghorn stones again with my recurring infections...

my uro said there will always be calcifications down there...oh goody...if they're in the tissue they cant treat them...so we just wait til they drop down to the kidney...and like you said there really isnt a cure...if you're a high risk stone former which I am...then you're basically stuck with this disease...and it has been the longest two years of my life...i am so glad i found this forum...

I wish you well, too...

if you have any other suggestions let me know it is always good to get someone else's point of view since you have had the same treatment and stones I have...frustrating that my stones dont pass...

[mctripat]

I do not know where you are but I have had advice from Dr. Leslie, who is on our yahoo kidney stone board medical adviser. I have a list of about the top 15 urologists in the USA. I can get more advice and find out where other doctors are... I can list the states, California, North Carolina, Texas, Wisconsin, Ohio, Indiana, Minnesota, Pennsylvania, also Mayo clinic in Arizona and Florida.... also Illinois, and Missouri

You can also go to US News and World Reports and look up best hospital list for urology http://www.usworldandnewsreports.com I almost went to the Cleveland Clinic this summer... but thought I needed to be gone at least 4 months. You can get ane e opinion for $500.00 go to this web site http://www.drleslie.org He also helped write a kidney stone book .... You can send him a email directly or contact me if you wish. I have had kidney stones since 1965.

my name is Trish [moderator note: e-mail address has been removed]