kidney stones are plagueing me

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kallisi
New Member


Date Joined Aug 2011
Total Posts : 1
   Posted 8/19/2011 7:19 PM (GMT -7)   
I am 25 years old (female) and have gotten my first kidney stone ( or should i say stones )  I have been plagued by the pain from one or several of them now since July 27th.  Had extreme pain which landed me in the ER sent home with vicodin and a referal to a urologist after finding stones. Only have pain on the right side which radiates down and around the groin but I have a bunch of stones in both kidneys ( around 1.5 mm each but lots of them).  After a week or two of constant pain that faded in and out with its strength ( but always some form of discomfort present) the pain stopped.  Mind you no stone caught in a strainer , nothing.  Urologist figured i passed it and sent me for ultrasound and a urine collection, that was Aug 9 or so . Here it is the 19th and the pain is back and kicking.  There is no sign of any stones in my ureter or traveling anywhere ( my ultrasound was today, all the tech saw was stones in the kidneys.) I am puzzled as to what is going on and extremely frustraited.  My urologist also thought that i might have had a 3mm in my ureter but he could not get the radiologist to confirm his inclination ( ive had an appendectomy and the radiologist didnt think things were in the right place and bla bla, but the urologist stuck with his thought that there was one there in the ureter.  ) I'm also on Topiramate for migraines, which he doesnt seen to concerned about.
 
However here it is several weeks later and no stones have passed, still in pain, still no answers.
 
Oh and BTW in getting married in 2 weeks  and then will be leaving for a 2.5 week honeymoon.
 
thoughts?

Post Edited (kallisi) : 8/19/2011 7:23:42 PM (GMT-6)


txarmywife
Regular Member


Date Joined Aug 2011
Total Posts : 45
   Posted 8/19/2011 8:40 PM (GMT -7)   
First of all, I want to let you know I understand your frustration and am sorry that you are going through this. The pain felt from kidney stones is one that is by far one of worst pains....and the exhaustion/achiness that can come from them is certainly disheartening. Thats only made worse when you're in pain and the doctors cannot seem to find the cause of it. AND when you have such an exciting upcoming event that you want to feel well for! I do have some questions for you and perhaps some suggestions for you because your story sounds a lot like mine. First have they ever mentioned you had a kidney infection? That can certainly cause pain and usually if you have stones (and multiple ones at that) it is highly likely at some point or another you will develop an infection from the foreign body in your system. If not, a 1.5 mm stone should be able to be passed (usually they begin to worry about 4+ mm stones getting stuck in the ureter and obstructing) and although certainly uncomfortable the good news is that at some point your pain should go away! My next question would be have you ever had blood in your urine, particularily at the time that you were in your worse pain? Usually those who have kidney stones have a microscopic amount of blood in the urine, but once the stones begin to pass or obstruct (which can actually happen at the base of the kidney/beginning of the ureter depending on your paticular renal anatomy) you begin to see visible blood in the urine. These are important findings to mention to your doctor. Have they ever said your stones were in your ureter or have they said that they are still in your kidney? (And the good ole "They shouldnt be causing your pain" nightmare) If so, I know first hand how that feels. Here is my story...


I am a 23 year old female with calcium oxalate stones known as Randalls Plaque Disease. This means my stones are not free floating but rather adheared to the kidney wall under a thick mucosa, so are unable to be removed at this time or broken up with a lithotripsy. How did I find this out? Thats where my long and painful journey comes in. I was first diagnosed with kidney stones just as you were. I first had urinary symptoms such as blood in my urine and feeling like I had to pee but couldnt, Nov 2010. I went to the dr and he told me I had a kidney infection. A few days later and on Cipro I began having an awful pain in my right side so I rushed to the ER. Ct scan showed I had 3 kidney stones (ranging from 2-4.5 mm) on the right and 2 kidney stones (a small 1 mm ea) on the left but they were still in my kidney and "shouldn't be causing my pain". So what was? I was heavily drugged up and sent on my way to a Urologist. He decided that I needed a ESWL (lithoripsy) to break up the 4.5 mm stone on my right side. So I was transferred to the closest hospital who had the lithotripsy machine.

In December 2010 he preformed a right side lithotripsy to break up the 4.5 mm stone. I was told after a plain xray I was stone free and was sent on my way. Jan comes around and I was still in pain, found out I had another kidney infection and was given Cipro.

April then comes and I am in excruciating pain. I go back to the original army doctor who wanted the ESWL preformed and he sent me for a CT scan....showing I still had all the same stones! So I go back to the doctor who preformed the ESWL and we decide that I am going to undergo a Ureteroscopy on the right side to remove the stones before my husband deploys because I needed to feel well as I would become the only care giver for our son. But of course said that he wasn't convienced the stones were the cause of my pain as they were still in the kidney and "shouldn't be causing me pain". So we do a Ureteroscopy on what I believe to be the right side and puts a stent in. He tells my husband that he removed all the stones and did find a narrowing of the ureter and believes that in fact is the cause of my pain. So I'm not crazy? Thanks. Thanks for finally believing my pain is real.

A week later and bleeding huge clots from the stent I go to the ER and they remove the stent with the approval of my Urologist. I get better for a little while and make the mistake of going on the boat a few weeks later. I water ski but make sure to drink plenty of water while in the sun. All of a sudden I am in excruciating pain. I literally feel as though I am dying. So I'm rushed to the ER, doped up yet again, and sent for a CT scan. Guess what? My stones are still there. Hmm. But in my kidney and "shouldn't be causing my pain".

My husband deploys, my doctor cancels my post op, and I move back home to be with family before the rescheduled post op. Still in pain on my right side (always only ever had pain on my right side) I go to my new general doctor to get a new Urologist refferral (stupid insurance protocol) in tears. He once again dopes me up on pain meds, tells me I have a kidney infection so prescribes Cipro and gets me in to a Urologist. I go see that Urologist. He does the CT scan/plain xray thing again and of course tells me I still have the same stones in my kidneys. He gives me meds (Norco and Uraxatrol) to see if I'll pass the stones. I don't. So a few weeks later and still in pain he pounds on my back and says that my pain is muscle/back problem (My particular pain has always been on my right flank/back just below my ribs...right were my kidney is) and sends me on my way saying to go back to my regular doctor and ask to be referred to a back specialist. Huh? So a back problem causes blood in my urine. Ok. So I'm in tears leaving his office from him pounding on my back and feel so defeated. I feel like all these doctors think I'm crazy and don't think my pain is real. So I walk out and immediately call my regular doctor who gets me in later that day. Guess what? I have a kidney infection so he sends me to a different Urologist upset that the Urologist missed the kidney infection!

So this is where my story (and I apologize its so long) turns out for the better and I finally 1) get answers & 2) find the source of my pain. I am sent to the most amazing Urologist. He is an older gentleman and one of the first doctors in Houston ever to preform a Ureteroscopy. He looks over my records and asks, "Where you having pain on your left side?" I say, "No my pain has only been on my right." He says, "Well I'm glad you're sitting down for this. In May they never went in your right kidney. They only went in your left." As in...they did the wrong side during the ureteroscopy! No WONDER I'm still in pain! He then talks to me for an hour and explains I do in fact have a narrowed Ureter on the left which was causing obstruction and a condition known as Randalls Plaque Disease, meaning the stone was embedded in the kidney but the Urologist was able to safely extract the stone from the wall and remove it. He then explains what is very important for someone in the position as you and I to understand. (Again so sorry this is soooo long I hope I haven't lost your interest)


The important stuff: (As it was explained to me)
Kidney stones in the kidney CAN cause pain. A stone can be right at the edge of the meeting of the kidney and the ureter and actually float back and forth between the opening of the kidney and ureter...a space that is very narrow. The kidney stone is not what causes pain. It in fact is the back up of urine that causes the pain. Just like a narrowed ureter (which can cause the same pain), the stone obstructs the normal flow of the urine. This causes the area preceeding the stone to swell and back up into the kidney, causing pain. The pain is only then relieved when it is unobstructed, moves a little, and then once again obstructs. That is why the pain comes and goes. It's obstructing then freeing itself, then obstructing. A CT Scan only takes an image at that moment in time. There is no way to say with absolute certainity that the stone could not have moved and was once obstructing or will obstruct in say....5 minutes from that CT Scan. But as mentioned, is hard to prove.

But you're in pain...so what do you do? This is what my doctor did. He preformed a Urteroscopy the following week on the CORRECT side (right) and also the left to make sure the left sided obstruction was ok and to remove a small stone on the left. My Ureteroscopy showed that 1) my stones were not free floating in the right either, I had Randall's Plaque in the right kidney and left 2) I had two obstructions in the right side & 3) he removed the stone on the left as it was able to be removed and not as deep as the right sided stones. He put stents in both sides (common after a Urteroscopy but in my case to help with the obstructions which by the way can cause pain and never once showed up on my CT scan) and a few days later I had complications. I ended up in the hospital for 3 days (this was last week) and ended up having a second Urteroscopy on the Right just to double check that he didnt miss anything and to remove the stents which were causing my problems (massive pain and blood as my left side was easy to bleed...I had the same issue during the wrong sided Ureteroscopy in May)

You tired of reading yet? :) I swear I'm almost done! I am now feeling AMAZING! He is unsure if my pain was caused by my narrowed ureters or Randalls Plaque stones. Because little is known about Randalls Plaque and he can not 100% say that it isnt possible for the stones not to cause pain but certainly the narrowed ureters cause pain as just like stones, they cause back up of urine. But what is important is that 1) my excruciating pain is gone and 2) that I learn to watch my urine output to decrease the formation of the stones....that at some point will eventually break through the mucosa lining and cause problems the whole time growing and growing! How fun! 3) the stents were able to correct the obstructions/narrowed ureters but will need to be closesly watched in the future

So what does all this semi nonsense mean for you? 1) Maybe you have a narrowed Ureter causing your pain 2) Maybe you have a stone that is free floating and going back and forth, causing your pain 3) You're not crazy and I at least know your pain is real! :D 4) Perhaps discuss these possiblities with your doctor and see what he thinks.

For me a Ureteroscopy found my problem. But a Ureteroscopy (and any kidney procedure) does have its risks. As you've seen in my case I did had some complications as a result but I wouldn't change it for the world. For the first time ever I do not have ANY renal pain not even a dull ache. The recovery was semi quick even with my complications, so it may be an option to discuss with your doctor and consider. As any procedure, outweight the possible risks and benefits to see if its right for you. I wish you the very best of luck and I am so sorry you're dealing with this especially at a time that should be so happy and joyous! Please keep us updated.

mscrowbar
Veteran Member


Date Joined Nov 2010
Total Posts : 877
   Posted 8/23/2011 2:28 PM (GMT -7)   
I have had many kidney stone issues. They just kept coming and coming. No sooner get rid of them all new ones would form. And I hate those stents.
One year I had severe kidney pain and went to emergency room. I was told I had 3 stones in one kidney and 2 in the other. The smallest was 2.5 and the largest 5.something. They gave me pain meds and set up a urologist appt. I had several procedures to get rid of them. This started in July and by Sept all but the smallest one had been removed. My last procedure was scheduled for Oct ? and the last week of Sept I had severe pain again. Went to er and was told I had a 10.5 stone in right kidney. In just over 2 months that stone grew from 2.5 to 10.5. That was quite large as far as stones go and quite painful. Apparently it was triangle shaped and the wide side was caught just in side the ureter.
I had so many stones and tried different diets/food eliminations, had so many procedures to remove them and done urine analysises on manay occasions and no reason was found as to why I was getting the stones or as to why they were growing so fast.
By the way mine were oxalate stones. The doc finally told me, " I know that you may not want to hear this but you may have less stones if you limit your intake of protein and add more carbs to your diet. We cannot find anything else so maybe that will help?" I eat small amounts of protein and lots of pasta, rice and breads. I also eat some fruits and veggies but not from the oxalate list. And, believe it or not, I have not had a stone since. And, as a bonus, my IBS issues went away too.
I know it sounds crazy and I did gain weight from that diet but I will take the gain over the pain. I'm not touting it as a cure all, I'm just telling you what was said, my reaction/actions, and my cure. He never did explain why that might work and I haven't had the need to go back to ask...........
Denita
**************************************
Rheumatoid arthritis with secondary Sjogrens, Fibromyalgia, meniscus tears in left knee, Cancer survivor

Paul L. Viverito
New Member


Date Joined Dec 2011
Total Posts : 4
   Posted 12/24/2011 8:48 AM (GMT -7)   

I thought this additional info might help. Over the years I must have passed a hundred kidney stones or Crystals. I did catch a crystal and the analysis showed they were Uric Salts. While I was in the hospital some years later I mentioned the Uric salt to my Doctor, he gave me an IV an all the crystals or stones disappeared. It's been a few tears now and they haven't come back.

How I discovered Bladder Cancer (ADMIN, I COULDN"T REMOVE THE AD)

 

 

 

0

And Survived

I was out with two friends fishing from my boat, a male and his lady friend , we fished for a good part of the day . My male friend decided he had enough and wanted to go to shore but his lady friend was an ardent fisherman (Fisherlady) and she wanted to continue fishing ,so I agreed to take her back out. We were anchored up in a narrow creek that didn’t have an accessible shore line. I had to urinate and normally with the guys on the boat we would do so off the stern of the boat ,but I didn’t want to embarrass my lady guest so I waited as long as I could but could not hold out any longer. I excused myself and went to the stern of the boat to urinate. When I started to urinate it appeared that I was urinating a Merlot Wine, My urine was coming out pure blood and shortly I could not urinate at all. I mentioned to my guest the problem I was having. As it turned out my guest was a registered Nurse and the Coroner in her home town. She immediately went in to action and started hauling up the anchor and yelled to me to start the motor and head back to the dock. On the way in she called her friend and told him to meet us at the dock.

Arriving at the dock they immediately took me to the nearby hospital emergency room. I spent a half an hour filling out paper work and explaining my problem and was then told to go to the waiting room. After what seemed to be an eternity I felt I had to urinate. I went to the men’s room and I was able to urinate, it started out as blood but eventually it cleared up and back to normal. I thanked my friends and I told them everything seemed to have cleared up and I was going home.

I called a doctor friend of mine and he told me that I probably ruptured a small blood vessel by waiting too long to urinate. I called my local doctor and he said I probably had an infection in my bladder. I never experienced any pain, discomfort or an inability to urinate before so I figured that it was a minor problem.

I continued to urinate normally for the next month or so and then suddenly I started urinating blood again. This time I called my local doctor and told him that I wanted to see a Urologist. The Urologist’s facility was well equipped and he ran all of the usual tests, his conclusion, I had a cancer in my bladder about the size of a half dollar, but it looked like it hadn’t gone so far that it couldn’t be just scraped out. The Urologists facility had a surgical unit so they immediately took me in to scrape my bladder. The scraping wasn’t successful as it was determined that the cancer was a not a grade two which would have made the scraping possible but a grade three which meant the cancer penetrated deeper into the tissue.

The doctor said that I had four options, Chemotherapy or Radiology which he didn’t think would improve my chances of survival. The odds were somewhat greater than 50% that they would not work. The other two options were to remove my bladder and build another one from part of my intestine, which he said if it worked it would be great, if it didn’t it would be a struggle for the rest of my life. The second would be to remove my bladder and surrounding tissue including prostate and nearby Lymph node. That procedure would require that I use an external bladder to replace my original one. I chose the latter and I don’t regret to this day (five years later). It’s slightly inconvenient but in some ways it’s helpful.

What surprised me most that there weren’t any signs or symptoms that I had this problem and if I didn’t urinate blood when I did I wouldn’t be alive today. I guess all I can say in closing is that these things don’t just happen to the other guy, you’re a target too. So be aware.

Paul L.Viverito



Read more: http://www.bukisa.com/articles/210071_how-i-discovered-bladder-cancer-and-survived#ixzz1hSn9mmFR

Post Edited (Paul L. Viverito) : 12/24/2011 7:55:26 AM (GMT-7)


Bridget123
Regular Member


Date Joined Jan 2012
Total Posts : 30
   Posted 1/6/2012 7:42 AM (GMT -7)   
Hey guys - I'm new to the forum and of course to this thread but I felt like I should add a note here regarding Randall's Plaque. I have Medullary Sponge Kidney and while I'm certain no doctor I'd definitely suggest asking your doctor about this if you haven't already. Now again - I'm not an expert (just going from personal experience only) but I've had surgery to remove Randall's Plaques - and maybe Randall's Plaque Disease is the same thing as MSK I'm not sure of the terminology difference.... all I know is that MSK is like a birth defect basically - when the kidneys are formed with little cavities in the center and those collect Randall's Plaques which develop into stones and there ya go (again with the "I'm no doc" speech - I'm just explaining it how I understand it). If you google MSK you'll find it's prevalent among women and usually shows up when they are in their 20s or 30s. I got my first kidney stone at 19. There's also varying cases of MSK from my sister and mom who have only had a couple stones to me who gets them so many times I've stopped counting. So if you're reading this and you haven't come across MSK before in research or in what doc's say (not strange - it took me forever to get diagnosed with it - not saying you have it just saying it happens) - look into it. Knowing what causes the stones can help prevent them - like there are certain foods to avoid or minimize and some to increase. Anyway, good luck and feel better :)
- Bridget

Healthi101
New Member


Date Joined Aug 2012
Total Posts : 1
   Posted 8/29/2012 9:15 AM (GMT -7)   
@kallisi
 
First off, you should have the doctor rule out an infection. There is certainly a chance that you have kidney stones especially if you have had them in the past! You stated that you are getting married and are soon to depart for your honeymoon. Kidney stones is not something you want to deal with right now. You should look into a product called Renavive. Renavive is a natural kidney cleanse designed specifically to eliminate kidney stones. I have referred this product to so many kidney stone sufferers that I know and they all praised me for the referral. The product is nothing short of amazing and could certainly help get you through the next few weeks with enjoyment as opposed to agonizing pain. Check out the Renavive product as it is certainly worth your time and anyone else who has or ever had kidney stones!

mrsbugzy
Veteran Member


Date Joined May 2012
Total Posts : 641
   Posted 9/10/2012 6:47 AM (GMT -7)   
OMG txarmywife...you went thru a world of hurt, I can sympathize, but in a different capacity! But I won't go into that or it would be longer than your post..lol
What I did want to say, is that our 10 year old came down to our bedroom christmas eve/christmas morning crying her back hurt. So I thought she pulled a muscle or something..so I gave her some tylenol, rubbed ben gay on her back and we laid back down. She calmed down for like a 1/2 hour, then was in tears...so off to the e.r. we went. They did blood work, and urinalysis...finally the doc came in and said they called in a tech to do an ultrasound of her kidneys to see if she had any stones. ? I was like, "she is 10!" But the doc wanted to rule stuff out, so I agreed, but was flumoxed at the thought of a 10 year old with kidney stones...needless to say, they found 1 stone that was 6mm. So 3 hours later Shay (my daughter) and I are in an ambulance on our way to a hospital 4 hours away from us for surgery. Well, on the way, or sometime that night, her stone dropped into the urethra (sorry if I get this name wrong, but between kidney and bladder) and stayed there. So they did another ultrasound in the morning, and since the pediatric urologist was on vacation (of course he is, it's christmas morning!) An trauma team surgeon looked at her scans, and said, "This is your decision, the surgeon consult said to go in her back and stent this until her can get here. But, I have to tell you, where the stone is is not a good spot, BUT, there is at least urine passing around it. So, most of the pain she has felt is going away since the urine is now moving..BUT, again, he does NOT want her going back to New York. So the decision is your. If she were my child, I would stay here, and wait for him. Since the urine is flowing, I don't want to cut into her. I think we can wait until he gets here in 3 days."
So, we waited. We stayed at the hospital for another day, then went to Ronald McDonald house for 2 days.
When the surgeon came back, he went in, and unfortunately, the stone had worn a hole in the urethra. So he had to put a stent in anyways, but at least he got the stone out, where the other surgeon would not have.
So, fast forward to July ( a mere) 7 months later...Shay again comes crying to my room...mom, my back! I had some of the pain meds left, so I gave her a dose, and in the morning called our pediatrician. Told him what was up and to please order an ultrasound, I would come get the paperwork. So we went and had it done.. guess what? In that 7 months she developed ANOTHER 6mm stone!!!
So, they went in for that one, and took it out, and had to do antoher stent because he tried to take on out that was growing and he figured while he was in there to grab it, but it caused some bleeding/clotting issues..
SO, here is my point....( which none of you mentioned, this is why I am mentioning it!)
They did a 24 hour study and found she has an overabundance of calcium in her diet.. she can now only have 1 serving of dairy a day and must increase her real lemon intake. As lemons (only lemon and only REAL lemon) help break down kidney stones that come from calcium!
Sorry, this was so long, but that is our experience..best of luck to all of you, I hope it gets better...
Celiac
total colectomy with ileo rectal anastomosis 1/12

titchy
New Member


Date Joined Oct 2012
Total Posts : 1
   Posted 10/13/2012 7:38 AM (GMT -7)   
Kallisi
Congratulations on your marriage. I live in the UK. I am also on Topiramate, as a mood stabiliser. I have had flank pain - left hand side, haematuria (blood in the urine), right hand side groin pain, frequent urination (to start with) - March 2012! Have had several hospital visits chest x-ray, abdominal/pelvic CT - within normal limits, laparoscopy which I was hoping might detect endometriosis on the ureters (which can cause flank pain) dx dense adhesions joining ovary to colon - to be operated on when identified cause of upper GI pain. Referred to urologist who has advised bladder/kidney scan beg of Nov. Last week had feeling 'of not being able to breathe all the way in, sharp pain followed by a release' in right side had been having occasional pain on right hand side and yesterday the flank pain non-existent. What damage the stone being there if it was there, no bloods showed anything nothing showed(or was it missed) on contrast CT since March has caused I don't know, I've read conflicting things. I read with interest that you were on Topiramate as in the contraindications one of the uncommon side affects is kidney pain, one of the common side effects are crystals in the urine and other urine related complications. I would be interested to hear from anything that has had or thought they have had a stone in their kidney for a long period ..... and hope this has been helpful Kallisi - I will update on the outcome of the scans.

bettis252
New Member


Date Joined Dec 2012
Total Posts : 3
   Posted 12/4/2012 9:46 PM (GMT -7)   
I am new to kidney stones. Last friday i was in the er doubled over with pain on my left side and felt like i had to go to the bathroom so bad. The doctor came in and i described my symptoms he said it sounds like kidney stones. I had blood work done, urine sample and a ct scan. I was given medicine for the pain and IV fluids and out of nowhere the pain was gone. The doctor came in and said that my bloodwork was good and my urine showed a little blood in it and my ct scan showed that i had a 1mm kidney stone in each kidney. I left came home and had pain maybe once a day only in the mornings but always felt the urge to go to the bathroom but nothing would come out. I called on Monday to follow up with a Urologist and after he pulled all my test from the Hospital he called and said that my stones were not that big of a deal and that there was nothing in my urine and I would not have pain with the size stones that I have. And that my ct scan didnt show me passing a stone. All I know is I wake up in the morning with severe pain in my left side towards back and the urge to urinate. And I have been on Cipro for 3 days. Any advice out there as to is this Urologist right or the ER doctor right and I was told to wait it out for about 10 days

tvba10
New Member


Date Joined Dec 2012
Total Posts : 2
   Posted 12/7/2012 12:05 PM (GMT -7)   
Txarmywife: I realize your post I am replying to is old however, I felt as though I was reading my own story. I have a kidney stone right side, that has been causing me excruciating pain on and off for a few years. Ive been told so many times, non obstructing cant be causing pain!! Want to scream! How can they tell us we're not having pain? I have gone through 2 lithotripsies and one ureteroscopy stone is still there! Was told about urine being backed up after one procedure, but no other mention! Am SO frustrated I do not know what to do!

Post Edited (tvba10) : 12/7/2012 11:16:50 AM (GMT-7)


bettis252
New Member


Date Joined Dec 2012
Total Posts : 3
   Posted 12/7/2012 3:36 PM (GMT -7)   
okay so my pain on my right side has been gone for a couple days now it feels like a burning pulsating feeling in my ureatha. Is this part of kidney stones or has anyone had this happen to them. I have been waking up in the mornings with a pulse/pain down there. So confused on this and it feels like i have to use the bathroom alot.

T. Parker NREMT
New Member


Date Joined Dec 2012
Total Posts : 1
   Posted 12/27/2012 3:25 PM (GMT -7)   
Txarmywife and Tvba10: I have been reading a lot about people that have unobstructed kidney stones and being in a lot of pain, and their doctors telling them they should not be in any pain because they're not obstructing the ureters. I've been dealing with this very problem for years now, and ever Urologist kept telling me the same thing, I shouldn't be feeling any pain. Never mind the fact I have about 10 stones or more between my two kidneys, I'm peeing blood, get regular UTI's, have CT's showing my kidneys inflamed, and had my Creatinine level spike to 1.8mg/dl (this is high) a few times. Then I found a Urologist that looked at this a said "Yes there is a very rare condition that can cause severe renal pain even though the stones are not obstructing. This condition is so rare that maybe only 1-10 urologist have ever heard of it, but just because its rare doesn't mean that it doesn't exist, it's called Medullary Sponge Kidney Disease and I think you have it."
I'm going to post a link that you can use to research this condition, to see if it sounds like what you are going through. I know first hand how bad kidney stones hurt, and how it feels when doctors are telling you,"you shouldn't be in any pain." and you hurt like hell. Or they do believe you but don't know what do for you, because they're not sure what is really going on. You see I was diagnosed with this back in 05' when I had insurance, but after I lost my job due to a back injury I lots my insurance. I had to start going to a small clinic for people with little or no insurance, and I couldn't remember the name of the condition I had. So I had to start the process all over again because none of these doctors would take the time to call my old urologist, they just told me that nothing like that exist. So after a few months of being in a lot pain with little no help, passing 8 stones ranging in size for 4mm to 2 1/2 mm, and being treated like a drug seeker (not a good thing to be thought of when your an NREMT by trade,) I did my own research and found Medullary Sponge Kidney. As soon as I started reading about it that whole conversation with my old urologist came back to me including the name. So now I'm trying to get my doctor and his PA who have been treating my stones since July to look into this condition and call my old urologist to confirm it so I can get proper pain management, since there is no cure for this disease.
So if you have chronic UTI's, multiple bi-lateral kidney stones (a bunch of stones in both kidneys), and/or chronic renal pain of an unknown origin this might be the answer your looking for.
http://emedicine.medscape.com/article/242886-overview

Post Edited (T. Parker NREMT) : 12/27/2012 2:48:27 PM (GMT-7)


tvba10
New Member


Date Joined Dec 2012
Total Posts : 2
   Posted 12/30/2012 4:32 AM (GMT -7)   
Thanks so much for the info T Parker, its comforting to know I am not alone and am not crazy as most doctors treat me.
I will look into the link you provided.

rbb
New Member


Date Joined Jan 2013
Total Posts : 7
   Posted 1/22/2013 2:37 AM (GMT -7)   
Have you been to a Nephrologist?  They can send your urine to a company called Litholink.  Check out there website.  They have tons of information on kidney stones.  I also have an exceedingly high oxylate level as well as a low citrate level and a I dont drink enough.  I was told to do the following things.  For the high oxylate level you need to take 100mg of vitamin B6 daily and take 500mg of calcium citrate with every meal - it must be calcium citrate because calcium carbonate causes kidney stones.  The calcium citrate binds with the oxylates and elimates them when you eat.  Everyone needs to drink more.  You need to drink atleast 8 glasses per day if not more - look at your urine in the bowl if it isnt perfectly clear then you arent drinking enough.  For my low citrate level, I also take magnesium citrate and uro-cit K (Potassium Citrate) - each 2 times per day. 
Litholink is an amazing company and that is all they do.  They will analyze your urine for about 20 different vitamins and minerals - and then give your doctor a 10 page summary of what is causing your stone and what to do to correct the problem.  It is an amazing process.  You call the company, they send you a test kit and then yuo call FedEx when you are done and they come to pick it up. It is well worth it.  I have done it twice.
I started with Kidney stones in the summer of 2011, about 3 months after having an illiostomy reversed after about 18 inches of my colon reversed from a perforated colon.  That makes me a high risk for stones.  I had my first surgery in July and second one in October 2011.  The one in October - when I went in, they took my temp as part of the prep, I had 103.8 - I was septic - it turns out one of the stones tried to pass on its own and got stuck.  So, the surgery was cancelled but they rushed me in the OR anyway but just to put in a stent.  Each time they did any of the Uteroscopies with Lithotripsies or even just the stent insertions, I not only would spike a fever for days but I would bleed uncontrollably in my urine for 7-10 days. The urologist never saw anything like it before.  Each time, I was in the hospital for 10 days.  I came close to needing a blood transfusion.  After the stent was put in, it stayed in for 2 weeks and then I went back in at the beginning of November to have it taken out and then to have the surgery I was supposed to have - another ureteroscopy with laser blasting and insertion of another stent.  I cant stand the stents - they would burn and itch so bad the entire time.  I seemed to do okay for awhile - stones were cleared out of both sides.  Then 2012 came and I had more stones again on both sides and I was getting constant bladder and kidney infections.  It started in April when I got my first infection and I went on Macrobid and it seemed fine.  A week later it was back.  Then cipro.  Then levaquin.  All was fine.   A couple of weeks later, it was starting again.  This time the macrobid didnt work again.  More cipro. Then levaquin.  By time June came I was getting resistant bladder infections and was hospitalized for IV antibiotics.  Then in July, I was hospitalized again.  In August again - 2 times. I kept telling my urologist that the infections were caused by the stones and asked if she would blast them but she said no, they were too small and couldnt be causing pain since they werent obstructing. Back in the hospital in   September, 2 times.  In October, I was rushed via ambulance to the ER - unbearable flank pain and it turns out I had a kidney stone obstructing my ureter and I was rushed into surgery for a stent within hours - again I was in the hospital for 8 days for IV antibiotics - thank goodness no bleeding this time.  10 days later, I went back to have the stent out and have the Ureteroscopy and laser blasting to clean out the entire right side.  Thank goodness since then, I have had no infections - it turns out, the infections were all caused by those stones on the right side = I still have stones on the left side but they are just sitting there being quiet and causing no pain or infections.  Thank goodness.  Now, I am using a different urologist - my original one's partner and he agrees that the infections were due to the stones.  She was just afraid to operate because of my bleeding.  Once I needed a transfusion but to me I would rather get a transfusion than have to go in to the hospital every 2 to 3 weeks for IV antiobics for 7 to 10 days.
As far as the high protein / low protein = my nephrologist told me to stay somewhere in the middle.  I used to be on a super high protein due to having gastric bypass = on top of eating all high protein foods,  I was also drinkg 2 protein shakes per day with 45 grams of protein each last year so I have slowed down on that.  He said we need protein to stay nurished.  It isnt healthy to live on carbs, yes some are okay but a high carb diet is putting us at risk for diabetes and I finally got rid of that by losing the weight and I dont want that to come back.
  The fact that you had a stone grow from 2.5 mm to 10.5mm in 2 months that is insane and you need to find out the cause or you are going to be in big trouble.  Some people with super large stones end up needing surgery to get rid of stones, no lithotripsies or ureteroscopy.   Large stones that are called staghorn stones end up needing open surgeries - there is a procedure where they make a 1 inch procedure in your side and they can vacuum out the stones.  Stones that large cant be done with a scope or lasered.  as far as pain goes, they are all unbearably painful.  I had a 4 mm stone that was stuck and I thought I was going to die and that is with a fentanyl patch on and with high dose oral dilaudid.
mscrowbar said...
I have had many kidney stone issues. They just kept coming and coming. No sooner get rid of them all new ones would form. And I hate those stents.
One year I had severe kidney pain and went to emergency room. I was told I had 3 stones in one kidney and 2 in the other. The smallest was 2.5 and the largest 5.something. They gave me pain meds and set up a urologist appt. I had several procedures to get rid of them. This started in July and by Sept all but the smallest one had been removed. My last procedure was scheduled for Oct ? and the last week of Sept I had severe pain again. Went to er and was told I had a 10.5 stone in right kidney. In just over 2 months that stone grew from 2.5 to 10.5. That was quite large as far as stones go and quite painful. Apparently it was triangle shaped and the wide side was caught just in side the ureter.
I had so many stones and tried different diets/food eliminations, had so many procedures to remove them and done urine analysises on manay occasions and no reason was found as to why I was getting the stones or as to why they were growing so fast.
By the way mine were oxalate stones. The doc finally told me, " I know that you may not want to hear this but you may have less stones if you limit your intake of protein and add more carbs to your diet. We cannot find anything else so maybe that will help?" I eat small amounts of protein and lots of pasta, rice and breads. I also eat some fruits and veggies but not from the oxalate list. And, believe it or not, I have not had a stone since. And, as a bonus, my IBS issues went away too.
I know it sounds crazy and I did gain weight from that diet but I will take the gain over the pain. I'm not touting it as a cure all, I'm just telling you what was said, my reaction/actions, and my cure. He never did explain why that might work and I haven't had the need to go back to ask...........

cheerleading
New Member


Date Joined Jan 2013
Total Posts : 1
   Posted 1/22/2013 4:19 PM (GMT -7)   
i would like to get the name of the Dr. in Houston who treated you for Randalls plaque.
Thanks so much.

Mary

nicand77
New Member


Date Joined Feb 2013
Total Posts : 1
   Posted 2/1/2013 5:52 PM (GMT -7)   
I have a history of stones also. NOT FUN!! This has been going on for about 8 years now and I have never been able to pass on stone on my own. The other night I had a bad attack so I got an appointment with my urologist. They did an Xray and a catscan. The tests confirmed a few stones in each kidney. I have had a fever on and off for the last week now. So the Dr. puts me on Cipro and basically tells me I should NOT be in any pain because the stones are still IN the kidneys. She told me to just take Motrin which obviously does NOTHING for the pain. I read the other stories and I am glad I am not crazy!!!

Tisabeth
New Member


Date Joined Nov 2012
Total Posts : 8
   Posted 2/4/2013 5:55 PM (GMT -7)   
My story started back in September of 2012. I was rushed to the ER by ambulance because I got sudden, excruciating pain in my right side. I thought something exploded in there, the pain was nothing I've ever experienced and wouldn't wish it on anyone. I was in so much pain waiting in the ER and they were so busy that night...they had me waiting for nearly four hours before they even took me in for blood and urine. As the tech is taking my blood, my pain suddenly stops and I have this urge to go to the bathroom. I go and catch the darn stone in the cup.....I should have taken it with me but I didn't think straight. My experience was quick and done with or so I thought. I had a follow up with my urologist and the x-ray showed i had two more stones in my right kidney. So I am scared and anxious of that pain, I ask the doctor what do I do? He tells me just to drink plenty or water to flush them out and to follow the diet. Maybe I'm just ignorant to this issue, but I left thinking that they'll pass without pain...... three months later, I wake up and feel nauseous. I barely got thru a shower when pain started on my right side again. I was sweating, I felt sick to my stomach, but I knew what it was this time. I figured if I could just sit there and take it like I did in the ER the first time around, I'd be able to pass it on my own and feel better by the next day. I didn't endure it. I couldn't! It was just unbearable and I had to call my sister to take me to the nearby hospital. Luckily, my experience at this hospital was much better than the last. They took me in right away, gave me an ultrasound, took my blood,gave me an I.V., urine test, gave me CT scan and medicated me immediately. I had two stones...but not in one kidney like I was told months before...I had them in both sides. They sent me home with meds and told me to follow up with urologist. I never caught them, but the pain was gone. I felt better until the pain medicine left my system and then felt like I got hit by a truck! I was so sore! Urologist takes another x-ray and says that he didn't see any stones, but there was a possible stone in the right kidney. When I was in the ER, they told me they didn't see any other stones except what was passing. Is it possible that the stones can be so deep in the kidney that not even a CT scan can't see them? Well, here I am two months later and my doctor says I have a 6 MM stone. He wants to do a Lithotripsy to break down the stone. I'm anxious and still scared. I'm feeling helpless and alone and then I find this site and find comfort that I am not the only one out there going through this. I empathize with all of you out there going through similar situations and I wish you all comfort and healing. I just want it to be over.......

rbb
New Member


Date Joined Jan 2013
Total Posts : 7
   Posted 2/4/2013 10:25 PM (GMT -7)   
I am so sorry that you have joined the Kidney stone club.  I will tell you that if there were no stones seen on a CT, then there were either no stones at all or they were so tiny then they really meant nothing.  A CT scan can see stones as small as 2mm unless they did it with contrast (which they shouldnt use for kidney stones).  If they were smaller than 2 mm, then they couldnt have been causing any troubles.  A 6 mm stone that you have now, your urologist is correct in wanting to remove because it can get stuck when trying to pass.  Is it stuck in the ureter now? or is it in the kidney? 
 
My story is a long and complicated one.  I had a bowel obstruction and perforated colon in October of 2010 which caused me to lose 18 inches of my colon and ultimately needed an iliostomy.  After 3 months the illiostomy was reversed (thank goodnes - it was the worst 3 months of my life but it did save my life - they didnt think I was going to make it after the perforated colon).  Well, the reversal was in February of 2011 and the bladder infections started in April.  By June I was walking around with terrible back pain but didnt know what it was.  In July, my Endocrinologist sent me to the Urologist because my Urinalysis was loaded with protein and blood but no infection.  She sent me for a CT scan and 2 days later I was on the operating table - 4 stones on the right side - 1 was obstructing the ureter and I had 3 on the left.  It was the beginning of a long year and a half.  She did a cystoscopy and lithotripsy and blasted the stones with a laser and inserted a stent.  After the procedure, I lost a ton of blood and spiked a fever of 104 - was hospitalized for 9 days.  A week after I got home, I finally got the stent out - thank goodness it was torture, it burned and itched so bad.  After that, I got so many more bladder infections.  It took until October before I could finally have the left side done or so I thought.  I was scheduled for the middle of October.  The day I went in for the surgery, I felt fine other than I had terrible back pain all week but I had a KUB 2 days before and a CT the week before for something else and I was told all was fine.  I got to the hospital and I had 103.8 and I was septic.  My urologist called my bariatric surgeon in New York City where I had my gastric bypass because she is the one that did the CT scan (she was covering for my original surgeon) - it turns out the CT showed an obstructed ureter the week before but since it was related to my gastric bypass - she was looking to see if I had another bowel obstruction and she knew I was having kidney stone surgery, she failed to see the need to tell anyone that I had the obstructed ureter and let me walk around septic for a week.  If I were ever to sue a doctor it would have been her but I was so sick and not up to it but my urologist could have killed her.  So, they had to cancel my surgery but still had to take me into surgery to insert a stent for 2 weeks in order to avoid my from shutting down.  My Creatinine was through the roof.  So, I went back in 2 weeks and they took out that stent and then performed the original surgery and put in a new stent.  Each of those procedures, also caused me to bleed severely and again the lithotripsy also caused me spike a fever of 104 again.  I was in the hospital for 8 to 10 days for each time and I had a blood transfusion this time as my hemoglobin got down to 7.7 this time, the other times it went down to 8.1.  For some reason my body doesnt like having foreign bodies in it.  those surgeries were in Oct and Nov 2011
 
Then in 2012, the bladder infections were the main problems for me.  At first we thought the kidney stones were better.  My nephrologist tested my urine through a company called Litholink - that is all they do, you can check out there website - they do very thorough testing and I take tons of supplements to prevent the stones and it really helps - it all depends on what type of stones you have.  YOu can follow a certain diet too and you also have to drink alot.  I will list all that I take at the bottom because I think it will help alot of people.
 
Starting in March, I was beginning to get bladder infections again and I was taking Macrobid which wasn't working so I went on Cipro. At first it worked but then I got Yeast and needed Diflucan.  Then they kept coming and I would go back on Cipro and then that stopped working and I would try Macrobid again and nothing, so we tried Levaquin and it worked at first and then that stopped working.  I am allergic Penecillin, cephalosporins (which are keflex and all things that start with Ceph), sulfa and cleocin.  So, that doesnt leave anything else to treat a bladder infection with.  So, by June when the bladder infections started coming back resistant to all oral antibiotics accept for the things that I am allergic to, I had to be admitted to the hospital for IV antibiotics.  They treated me with Durapenim which is very strong and very effective.  I got better and 3 weeks later I was back in the hospital, another infection.  Back on IV antibiotics.  This time, I was on Vancomycin and Diflucan again.  Then 3 weeks later, again - back on Durapenim.  Then 3 weeks again - This time Meripenim.  Each time they checked me for stones and up until October, even though I had unbearable flank pain, I kept being told it cant be my kidney stones, because they were small and they were in the middle and bottom of the kidneys.  There was only nephrologist that said the infections were due to the stones and I agreed with him but my urologist refused to operate. By September I was in the hospital with infections every 2 weeks, it was insane and my PCP's partners were getting annoyed at me saying I was faking or elevating the amount of pain - I told them to try to live one day in my shoes with a kidney stone.  Then one night in October, I was playing BINGO and the pain in back was so bad I thought I was going to pass out.  Now, I have never passed a stone before.  They always get stuck when they try, even it they are tiny = that is why I told my urologist to not wait even if they are tiny because they are going to get stuck and she said, they wont.  Well, on Oct. 16th at 8pm, the pain started and by 4 am, I called 911.  By 7 am, I was on the operating table.   A 4 mm stone decided to try to pass and it got stuck in my right ureter.  Thank goodness, my urologist partner was there that day and he operated.  So, he was great.  All he did was put in a stent and then on Oct 31, Halloween my urologist did the full surgery.  When I asked her to do the left side - she basically said she wont be my uroloigst anymore.  We dont see eye to eye.  So, I now use her partner and I am very happy about that.  I will go back to him in a few months to talk to him about doing the left side if anything is still there.
 
The best thing happened though and I was right all along - now that the stones are gone on the right side - I have had a bladder infection since the surgery in October and that is a miracle.  It is so nice to not have constant flank pain and to not be in the bathroom all day and all night long.  I cant stand when doctors think they know everything when we know our bodies.  I even had my nephrologist agree with me and she still said he was wrong.
 
As far as treatment for stones - Calcium oxylate stones - 100mg of vitamin B6 daily, drink atleast 64 to 80 ounces of water a day, take 500 mg  calcium citrate with each meal - this binds with the calcium and removes the calcium oxylates.  It must be calcium citrate not calcium carbonate - carbonate causes stones.
 
If you have a low citrate level - in addition to the calcium citrate - you should take  300 - 500mg of magnesium citrate with each calcium dose and Potassium Citrate (this is a prescription called Urocit K) and it comes in 5MEQ, 10MEQ or 15MEQ - that is up to your doctor.  I started with 15MEQ, the usual starting dose and my nephrologist just doubled it 15MEQ, 2 times per day.  This is a very important supplement that is only used as a kidney stone preventative.  It isn't the regular potassium that people take for low potassium levels that is potassium chloride - this is potassium citrate.
 
People that have uric acid stones - there are other treatments that I am not familiar with because I dont have that type of stones.
 
Anyone with stones, should ask to have there urine sent to Litholink - it is so much more detailed than any other lab and the report is amazing.  Check out there website. YOu can see a sample report and also learn alot about stones.  There is a patient section, a physician section - I read both
 
 

rbb
New Member


Date Joined Jan 2013
Total Posts : 7
   Posted 2/4/2013 10:59 PM (GMT -7)   
I am so sorry that your little girl is going through all this.  I think I can understand why she is more than most anyone else on here.  I see she had a colectomy and I dont remember if it said she has or had an illiostomy or not.  I had a large part of my colon removed in October of 2010 due to a perforated colon and had an illiostomy for 3 months and that makes us at high risk for kidney stones.  It happened almost immediately for me and I see it happened pretty quickly for your little girl and I am so sorry she is going through this.;
There are certain things that you need to know that you havent been told and have been told incorrectly.  Obviously she had a 24 hour urine done but it sound like it was just done in the doctors office.  That isnt the correct way to do it for the true cause of kidney stones especially if you want to see how to prevent and how to change things.  There is a company called Litholink and that is all they do is test urine for kidney stones.  YOu should take your daughter to a Nephrologist which is a kidney doctor = different from a urologist. A urologist is a kidney surgeon.  A nephrologist is a practitioner of the kidneys and they actually treat and diagnose kidney problems - IE - kidney stone specialists, kidney failure, high blood pressure due to kidneys.  They are the ones that will give you a prescription to call the Company Litholink - then the company will send you kit - in it, you will collect your urine for either 24 or 48 hours, however your doctor orders and then it gives you instuctions on how to proceed.  Then you sent it back to the company.  They then send a detailed 10 page or so report to your doctor on what is causing your stones and what is needed to prevent them in the future.  I have had this done 2 times so far.  I get it done once per year and each time, we adjust my supplements so we can make sure that I am taking the correct things.
As far as you saying you daughter cant have dairy - that actually isnt true.  People that have what is called Calcium oxylate stones which are the most popular type stones  = what you need to do is take 500mg of calcium citrate with each meal in order to bind with the calcium that you are ingesting and it also binds with the calcium in the stones in order to prevent them.  It must be calcium citrate because calcium carbonate actually causes stones and that is what so many people remember from so many years ago and is still in the literature that calcium causes stones - it is the carbonate - calcium citrate prevents stones.
Because she is a child, it is that much more critical that she have her urine tested properly through litholink and see a pediatric nephrologist if you have one in your area in order to get the proper recommendations.  Being she has celiac and had so much of her colon removed, it is going to be a life long problem.  If you can get it stablized, it will really help.
I have had 5 kidney stone surgeries in the past year and a half since having part of my colon removed and hospitalized 12 times for chronic resistant bladder infections which turned out to be due to the stones which we didnt realize until the last of the stones were removed and they finally stopped in Oct. 2012.  I am praying that I am done and I am vigilant about taking all my supplements.
This is what I have to take - 100mg of Vitamin B6 daily - this is for calcium oxylate stones as well.  1000mg of calcium citrate 3 times per day, 600mg of magnesium citrate 3 times per day with the calcium, 15 meq of potassium citrate 2 times per day.  This is just due to the kidney stones.
Please check out Litholink.com  - where do you live - maybe I can help you find a specialist if you need some help.  I am in NY
 
mrsbugzy said...
OMG txarmywife...you went thru a world of hurt, I can sympathize, but in a different capacity! But I won't go into that or it would be longer than your post..lol
What I did want to say, is that our 10 year old came down to our bedroom christmas eve/christmas morning crying her back hurt. So I thought she pulled a muscle or something..so I gave her some tylenol, rubbed ben gay on her back and we laid back down. She calmed down for like a 1/2 hour, then was in tears...so off to the e.r. we went. They did blood work, and urinalysis...finally the doc came in and said they called in a tech to do an ultrasound of her kidneys to see if she had any stones. ? I was like, "she is 10!" But the doc wanted to rule stuff out, so I agreed, but was flumoxed at the thought of a 10 year old with kidney stones...needless to say, they found 1 stone that was 6mm. So 3 hours later Shay (my daughter) and I are in an ambulance on our way to a hospital 4 hours away from us for surgery. Well, on the way, or sometime that night, her stone dropped into the urethra (sorry if I get this name wrong, but between kidney and bladder) and stayed there. So they did another ultrasound in the morning, and since the pediatric urologist was on vacation (of course he is, it's christmas morning!) An trauma team surgeon looked at her scans, and said, "This is your decision, the surgeon consult said to go in her back and stent this until her can get here. But, I have to tell you, where the stone is is not a good spot, BUT, there is at least urine passing around it. So, most of the pain she has felt is going away since the urine is now moving..BUT, again, he does NOT want her going back to New York. So the decision is your. If she were my child, I would stay here, and wait for him. Since the urine is flowing, I don't want to cut into her. I think we can wait until he gets here in 3 days."
So, we waited. We stayed at the hospital for another day, then went to Ronald McDonald house for 2 days.
When the surgeon came back, he went in, and unfortunately, the stone had worn a hole in the urethra. So he had to put a stent in anyways, but at least he got the stone out, where the other surgeon would not have.
So, fast forward to July ( a mere) 7 months later...Shay again comes crying to my room...mom, my back! I had some of the pain meds left, so I gave her a dose, and in the morning called our pediatrician. Told him what was up and to please order an ultrasound, I would come get the paperwork. So we went and had it done.. guess what? In that 7 months she developed ANOTHER 6mm stone!!!
So, they went in for that one, and took it out, and had to do antoher stent because he tried to take on out that was growing and he figured while he was in there to grab it, but it caused some bleeding/clotting issues..
SO, here is my point....( which none of you mentioned, this is why I am mentioning it!)
They did a 24 hour study and found she has an overabundance of calcium in her diet.. she can now only have 1 serving of dairy a day and must increase her real lemon intake. As lemons (only lemon and only REAL lemon) help break down kidney stones that come from calcium!
Sorry, this was so long, but that is our experience..best of luck to all of you, I hope it gets better...

rbb
New Member


Date Joined Jan 2013
Total Posts : 7
   Posted 2/4/2013 11:15 PM (GMT -7)   
One thing I forgot to say, I am not quite sure why any licensed doctor would tell you that it is safe to let a 10 year old to wait 3 days with a 6 mm stone that is lodged in what you are saying the uretha ( I gather you mean the ureter?)   Where do you live that they do ultrasounds for kidney stones?  They should either do KUB (an xray) or a CT scan.  Ultrasounds cant see the ureters = so it is possible that it was in the ureters the entire time, it may not have dropped over the 4 hour period.  Stones cant be seen in a ureter on ultrasound.
The first mistake was listening to a trauma surgeon that knows nothing about urology.  They should have transferred her to a hospital that had a urologist on call, even if it meant using a helicopter.  You meantioned you are in NY - wear?  There is nowhere in NY state that isnt reachable via helicopter that cant get to either a hospital in lower NY = NYC, Westchester or even Rockland County where I am or in Upstate, you have Albany Hospital and I am sure there are plenty of other hospitals in NYS with good urologists.  She shouldnt have suffered.  I also cant see how in 3 days a 6 mm stone could have worn a hole in the ureter?  Did she need additional surgery to sew it up?  A stent just opens up the ureter to allow urine to flow through which is what should have been done the first night but if there was a hole, she would have needed surgery.
I forgot to comment on the lemons in my other post.  Yes lemons are good and so is any type of citrus.  Orange juice is very good too.  If you do a search on the internet = and look for foods that are high is oxylates vs low in oxylates.  I had a link to a site a ways back.  If I can find it, I will post it.  Many foods are good for calcium oxylate stones and others are terrible.  Citrus foods are great, chocolate and caffeine are terrible.
 
mrsbugzy said...
OMG txarmywife...you went thru a world of hurt, I can sympathize, but in a different capacity! But I won't go into that or it would be longer than your post..lol
What I did want to say, is that our 10 year old came down to our bedroom christmas eve/christmas morning crying her back hurt. So I thought she pulled a muscle or something..so I gave her some tylenol, rubbed ben gay on her back and we laid back down. She calmed down for like a 1/2 hour, then was in tears...so off to the e.r. we went. They did blood work, and urinalysis...finally the doc came in and said they called in a tech to do an ultrasound of her kidneys to see if she had any stones. ? I was like, "she is 10!" But the doc wanted to rule stuff out, so I agreed, but was flumoxed at the thought of a 10 year old with kidney stones...needless to say, they found 1 stone that was 6mm. So 3 hours later Shay (my daughter) and I are in an ambulance on our way to a hospital 4 hours away from us for surgery. Well, on the way, or sometime that night, her stone dropped into the urethra (sorry if I get this name wrong, but between kidney and bladder) and stayed there. So they did another ultrasound in the morning, and since the pediatric urologist was on vacation (of course he is, it's christmas morning!) An trauma team surgeon looked at her scans, and said, "This is your decision, the surgeon consult said to go in her back and stent this until her can get here. But, I have to tell you, where the stone is is not a good spot, BUT, there is at least urine passing around it. So, most of the pain she has felt is going away since the urine is now moving..BUT, again, he does NOT want her going back to New York. So the decision is your. If she were my child, I would stay here, and wait for him. Since the urine is flowing, I don't want to cut into her. I think we can wait until he gets here in 3 days."
So, we waited. We stayed at the hospital for another day, then went to Ronald McDonald house for 2 days.
When the surgeon came back, he went in, and unfortunately, the stone had worn a hole in the urethra. So he had to put a stent in anyways, but at least he got the stone out, where the other surgeon would not have.
So, fast forward to July ( a mere) 7 months later...Shay again comes crying to my room...mom, my back! I had some of the pain meds left, so I gave her a dose, and in the morning called our pediatrician. Told him what was up and to please order an ultrasound, I would come get the paperwork. So we went and had it done.. guess what? In that 7 months she developed ANOTHER 6mm stone!!!
So, they went in for that one, and took it out, and had to do antoher stent because he tried to take on out that was growing and he figured while he was in there to grab it, but it caused some bleeding/clotting issues..
SO, here is my point....( which none of you mentioned, this is why I am mentioning it!)
They did a 24 hour study and found she has an overabundance of calcium in her diet.. she can now only have 1 serving of dairy a day and must increase her real lemon intake. As lemons (only lemon and only REAL lemon) help break down kidney stones that come from calcium!
Sorry, this was so long, but that is our experience..best of luck to all of you, I hope it gets better...

rbb
New Member


Date Joined Jan 2013
Total Posts : 7
   Posted 2/26/2013 10:28 AM (GMT -7)   
I am sorry that you are going this.  First of all, your multiple stones of 1mm is amazing that they were found.  Most stones under 2 mm cant even be seen especially on a sonogram and it is not suprising that they wouldnt be caught in a strainer - do you realize how tiny 1.5 mm is? Probably as small if not smaller or the same size as the slots of a strainer = depending on the strainer.
 
When a urologist is looking for stones, especially during an acute attack - you should have been sent for a non-contrast CT, not a sonogram.  A non-contrast CT is the gold standard test and will pick up small kidney stones and ones in the ureters while a sonogram will not show stones in the ureters.
 
I have been rushed into emergency surgery 3 times after having CT's and finding stones lodged in my ureters.  3 days after one of them which was with contrast for an abdominal problem, I had a sonogram to see if the contrast had cleared (needed to be cleared in order to have next kidney stone surgery) - was cleared saying no contrast and said all was fine.  When I went in for the surgery, I had 103.8 fever.  My surgeon called into NYC where I had the CT scan for the report and at her amazement, it said I had a 6 mm stone lodged in my ureter that my Bariatric surgeon failed to alert her of and the sonogram didnt show.  So, I was now about to go into surgery and was walking around for 3 days septic without knowing it.  Needless to say, the surgery was cancelled and you can see, sonograms are useless when it comes to your ureters.  I was rushed into surgery but not for the original procedure.  My urologist had to put in a stent to keep the ureter open where the stone was stuck, giving it time to heal.  After 2 weeks, I went back into surgery where she removed the stent and the stone in the ureter and blasted the ones in the kidney and put in a new stent.
 
A few other things you should know - the topamax (topiramate) you are on for your migraines puts you at risk for stones.  Most doctors dont tell you this or may not know this. My urologist told me this years ago when I first went on it.  I never got stones when I went on it, I also never got them when I had my gastric bypass which also puts you at high risk - I got them after I had a perforated colon and had a large part of my colon removed and had a illiostomy and then a reversal.  That put me at a super high risk and within 4 months of the reversal, I was having my first Kidney stone surgery. It happened that fast.  There are lost of risk factors.  You need to drink an emormous amount of fluids.  There is a great website with tons of information - Litholink.com
 
you should also go to a Nephrologist in addition to your urologist - they are doctor for your kidneys where urologist are surgeons for the kidneys and bladder.  The nephrologists arent surgeons, they are practitioners - basically deal with kidney stone prevention, risk factors, kidney function, high blood pressure, kidney disease.  The most important thing they can do for you as a kidney stone patient is to test your urine for you to determine what type of stones you have.  Litholink is a company that only deals with kidney stones.  Nephrologists deal with them.  They will give you a script and you call them.  They send you a kit where you collect your urine for either 24 or 48 hours. Follow the directions in the kit and send it to them in the box they sent to you.  Then they send your doctor a very, very detailed report - like 7 or 8 pages long with all the different vitamins, minerals, and other things that make up your kidney stones and what your risk factors are including what you need to do.
 
For me - I have severe high calcium oxylate levels, very low citrate levels, low calcium, low phosphate level, low urine output. 
The recommendations for me are: 
 
100mg of vitamin B6 daily
1000mg of calcium citrate 3 times per day with meals (must be calcium citrate - not carbonate, carbonate actually causes stones, citrate prevents them)
600mg of magnesium citrate 2 times per day with 2 of my calcium doses
15 MEQ of Uro-Cit K (Potassium Citrate) = 2 times per day
 
Drink atleast 80 to 100 ounces of fluid per day
Decrease protein intake which is tough for me since I had gastric bypass - for my gastric bypass I am supposed to have 100-120 grams of protein per day which is too much for kidney stone patients, so I am trying to keep it around 80 - 100.  Any less than 65 and I will get malnurished due to malabsorbtion.  I used to make protein shakes which were 45 grams of protein each and drank them 2 times per day plus food and had to stop drinking them due to my stones.  It is a shame because they were so good for me and tasted so good.
 
I do recommend you get your urine tested by litholink though - it is a really helpful thing for both you and your doctor.  The website is also very helpful. I wish you the best. 
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