Struvite Staghorn Kidney Stones - Anyone Experience?
Oct 5, 2014
In 2007 I started experiencing regular pain in my left side, after several visits to my GP I was told nothing wrong with me, and just muscular. Learned to live with the pain.
2013 Gave birth to my second daughter, and pain became so much worse, longer lasting and no longer responding to pain killers
May 2014 Visited GP and referred for ultrasound
June 2014 ultrasound revealed I had hydronephrosis of left kidney was referred to urologist
Aug 2014 urologist suspects birth defect and refers me for a ct scan
Sep 2014 CT scan and told they could see a stone
Oct 2014 Urologist for results-advised that I have an extremely large stone called a Struvite Staghorn and that it was going to be very difficult to remove. I have to have surgery to remove it..and it will be a large incision and surgery will last about 3 hours and a hospital stay for a minimum of 2-3 days.
I am now waiting for this surgery. My questions are 1. How long do you normally wait for this operation?
2. I have been searching for information about the operation I am not sure if it will be PNL or open surgery, my friend who came with me said that he mentioned open surgery as the incision would have to be large. Which surgery did you have?
3. Any side effects of this operation?
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Thursday morning I spent the night in the ER with a kidney stone in the left kidney -- when they did a CT Scan - they came and told me that they made an "incidental finding" in the right kidney that is a problem -- they have discovered that I have a "Staghorn" kidney stone that has attached itself and almost completely filled the right kidney. He said that I will not pass it and now my GP has made me an appt. with a Nurse Practitioner at the urologist's office for Tuesday morning to discuss my options. What are my options going to be?
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Bit of background; I'm 26 years old, male, live a relatively healthy, active lifestyle apart from not drinking enough water (paying for that now).
About 5 months ago I kept experiencing a dull ache in my groin area, it usually subsided within about 30 minutes so I thought nothing of it. Anyway, one night I got up to go to the toilet and the pain in my groin suddenly hit me like a brick to the face. I was doubled over and can honestly say I have never ever experienced such severe pain in my life. First thought was that my appendix had burst. My girlfriend called an ambulance and I ended up in A&E. The doctor came in and immediately said 'kidney stones', I shuddered. They gave me some pain killers (suppositories unfortunately as the pain was making me vomit). They took my blood and sent the results up to the lab. About 45 minutes later a nurse came in and asked me to do a urine sample. I was still in quite a bit of pain and hadn't drunk anything since the previous night but I complied. Well, all that came out was essentially pure blood, it looked very 'bitty' and I thought something was seriously wrong (apologies for delving into detail so much, I just think it helps to know everything). The nurse came in and said that didn't look too good so she sent it off for testing. They hooked me up ready to take an IV drip just in case I had to stay in.
When the doctor returned he told me that I didn't have kidney stones but had a mild kidney infection. They sent me on my way with a pack of codeine and some antibiotics. I took a week off work and just rested. By the end of the week I was back to normal.
Two weeks ago I was on holiday in Florida doing the usual touristy thing, Disney, Universal etc. Due to my hatred of bland water I hadn't been drinking that much and given the 40+ degree heat we were experiencing, that probably wasn't the best idea. At the end of week one I was lounging in the jacuzzi at the hotel, when the ache in my groin reappeared, it took me by surprise as I hadn't had any pain since being in hospital. I took some painkillers and thought nothing of it. Later on while out to dinner I went to the toilet and noticed some blood in my urine (I'm a bit of a worrier so immediately I was on red alert). I got my girlfriend and told her we needed to go to see a Doc the next day. After seeing the Doctor and paying $140 for the privilege (no NHS out there and they don't accept health insurance so you have to foot the bill initially), the doctor gave me some antibiotics and told me that my urine sample showed no signs of bacteria which would indicate and infection - she believed it to be kidney stones but a CT scan would cost me £400 so I declined.
I didn't believe her, I had faith in the NHS and thought she was just trying to get more money out of me. I took the tablets and kept up with some pain killers and started to drink a lot of water. Things seemed to go fine.
Two days after arriving back in the UK the blood in my urine came back and I felt aching in my groin and my abdomen and had lower back pain. I went to see my Doctor and he again said kidney stones. I explained about having a kidney infection and going to A&E and the pain etc and he said that it sounded to him like I actually passed a stone while I was in A&E. He said it's no excuse but it's not uncommon to be misdiagnosed. He booked me in for an ultra sound with the hospital but said it could be a few weeks. GREAT!!
I went home and started drinking water like a madman. I'd previously gone from drinking roughly 1 litre of liquid a day to suddenly drinking 2.5/3 litres of water. I was determined to flush these stones out (if indeed that was what I had). I reduced my sodium intake, I reduced my dairy intake and started eating a bit better and just drinking as much as I could. I began researching all about kidney stones and what fellow sufferers have gone through and found out that you should produce 2/3 litres of urine a day to prevent stones - before the last three weeks I'd have never produced anywhere near that. I was drinking so much water that I started getting heartburn. I'd occasionally see a tinge of blood in my urine but it was becoming less and less. On Monday morning I was reading something on a thread about a herbel remedy for kidney stones. Normally I've never given much credence to herbal homeopathic remedies but since there is very little you can do with kidney stones but flush them out, I figured it'd be worth a go. It's called Berberis Vulgaris and you take it three times a day, you let the little pill rest under your tongue until it dissolves. It's made from plant extract and helps to break down kidney stones. The lady I spoke to on the phone from the homeopathic website said that it's good for you kidneys anyway and that it works with some people and not with others. There are zero side effects and I thought, why not?! I ordered some and began taking them the next day when they arrived.
Now this seems like one hell of a coincidence but on Wednesday afternoon at work I went toilet. Immediately afterwards I felt a sharp shooting/burning sensation in my penis and an urge to urinate again. I quickly remembered reading that this pain usually means you're about to pass a stone. I grabbed a bottle of water and sunk it and waited for my bladder to fill. About 15 minutes later I went to the toilet and out popped a 3mm stone. I was elated. Later that same day another stone popped out, about 2mm. Just now, another one popped out, about 1mm.
My personal belief is that these herbal tablets helped break down this stone into little passable grains instead of one big stone. I felt zero pain at all and all my previous symptoms seem to have vanished.
I would strongly recommend these to anybody - worst case scenario, it doesn't work. You don't lose anything if that happens. I honestly believe that taking these little pills coupled with increasing my water intake helped break the stones down so I could pass them.
I'm now on a mission to never have stones again. Fingers crossed.
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Is it me or is this stuff a waste of time?
I've had obout 20 lithotripsy's in 15 years of having continuous stones. They've never gotten my kidney completely empty of stones ever. I've had lithos, ureterscopy, PCNL. On meds but they can't seem to stop them from growing. I avoid alot of the things that cause stones or limit them. Got to have the 1 cup of coffee in the morning
On the day before litho, your suppose to eat light ( nothing that leaves residue in bowl) but they say you can have white bread or boiled chicken. (Why bother?) I usually only eat jello, gatorade, and just broth. Plus tons of water. The instructions say to drink the magnesium of citrate after dinner. Well to me dinner is after 6/7. But I thought this time I would take earlier since last time didn't start to move the bowels until i was in the hospital. Plus this stuff is awful- taste bad- even refrigeration like they suggest doesn't really help. Twice in past I threw it up.
So I took at 5 pm thinking it would work earlier. Nope. Nothing. Just stomach cramping and it finally started around 5 am after me getting up every hour during night. Still was working again while in hospital.
There has to be something better (tasting) and work faster. Plus less side effects. Or they should change instructions & say take a noon. Next litho (in 2-3 months) I'm taking a 1/2 day off day before and taking at noon. Maybe then can get a little sleep the night before procedure.
Sorry- felt like ranting as frustrated as its been two full days since litho and nothing passing yet. Plus I have a bad back (2 surgeries) which makes it hard to do the exercises where you drink 2 cups water, wait 30 minutes, then elevate kidney @ 45 degrees and stay like that for 30 minutes to try and get the pieces to move.
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A while ago I had kidney stones, I was sent for a scan after, upon returning to my GP for the results of my test, he told me there were calcium deposits in my kidney that could mean I have another on the way, I've been trying to keep well hydrated and doing all I can to prevent a recurrence, because they're damn right evil, I've got away with it for quite a while now, last night I was woke up with the same pain I had when I had kidney stones, I sat on the toilet and waited for the pain so subside, it seems to have gone again for now, I was just wondering if I'm supposed to avoid eating foods rich in calcium, I'm also lactose intolerant and with all this I'm starting to wonder if I'm going to en up deficient in calcium.
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I know this is probably a place for guys but I cannot find anywhere else to post this ...here it is Last Monday me and my boyfriend went to the ER and they diagnosed him with having kidney stones... he got a cat scan and all that and they said the stone was almost in his bladder... they put him on loratab and flomax i think.... Well Tuesday or Wednesday we did "our" thing and everything was fine well here these past 2 or 3 days if he attempts to get his self off or if I try he cannot cum at all we have tried everything too make him cum and it will not work...
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I have a kidney stone and I seen on a site where it said sex helped so I tried but when I got off nothing came out everything feels normal but nothing came out ...
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Is it possible to have kidney stone pain while the stones are still in the kidney? I have about seven stones in my right kidney and five in my left... I've had lower back pain for almost a month straight and nothing makes the pain go away. I'm trying to get my urologist to call me back, but that is next to impossible if I'm not in the emergency room doubled over in pain. Any suggestions/comments are welcome here
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Had anyone had kidney stones? This is my 3rd child I'm 12+1 weeks. I'm healthy.but in the last 2 weeks I have had 4 kidney stones(on top of being really sick with"morning sickness"). Not kidding it IS worse than having a baby. MY ob said they don't effect the baby at all and pregnant women are more prone to getting them.
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I have had kidney stones for about 20 years and have had a number of treatments. My right kidney now works at 21% due to scarring and infections. My left is fine, working at 98% with one stone. I do not suffer many symptoms but do get an infection 1-2 times a year (I am experiencing my normal infection pain at the moment). My consultant has discussed removing my right kidney, obviously I have my concerns - will my other kidney be strong enough as I am susceptible to stones etc.
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I'm a 29 year old female 36 weeks pregnant. Back in January I had a large amount of blood in my urine and some flank pain ( nothing like what most describe with stones) happened again two weeks later so my OB requested a urology work up. I had a full ultrasound which showed mild fluid in my right kidney which is normal in pregnancy. Then sent me off to a urologist for a cystoscopy and two cytologies to look for bladder tumors and Cancer cells. All which were negative. Fast forward to April and again some flank pain with blood in my urine. Urologist wants a CT scan but can't due to pregnancy. So it became a waiting game. May comes along and im having blood every few days with a little more Intense pain lower along my hip and into my pelvis. No back or 'flank' pain per say but now I am urinating large clots and tissue and blood. Went to the hospital they pumped me full of fluids did an ultrasound and saw absolutely nothing and said probably a kidney stone we'll look closer after you have the baby.... Does any of this sound like a kidney stone? They feel it would be a small one since it can't be seen on ultrasound and I am not in excruciating pain. But I'm having a hard time wrapping my head around a 'small' stone causing so much trouble, blood and clots and taking MONTHS to pass... Any thoughts?
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As a frequent maker of kidney stones (20+yrs) I have for the last 4 years have been operated on approximately every 6 months for stone removal the last 3 times I have been fitted with jj stents which cause me absolutely agony ,I am unable to work with these stents inside me and have now lost my job .am I unusual in having this agony ?the specialists all seem to think I should be able to cope. How long do people put up with the agony before going to a&e?
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Is it possible to have 2 different types of kidney stones? I had a cat scan and it showed only a stone in the kidney. Is it possible I could have more and they didn't show up?
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I have had hyperparathyroid surgery. Had 3 of 4 removed. I also have had 3 lithotripsy (sorry about spelling) surgeries. About 2 weeks ago I had kidney scope surgery and blasted 30 stones on each side. Uro said he had never seen so many in one person. I have high oxalates, and slightly elevated sodium. My PTH is 77-106 off and on and my calcium levels are both normal. Uro and Endo are perplexed. I am wondering if it is because I have a malabsorption and a bad digestive system. They just don't know. I am watching my diet and trying to learn how to eat, but I have many food issues so hard to keep a perfect diet. I am scared to death the stones are going to come back. Doing lab and x-ray in 3 months. I want to find a specialist who can tell me why this is happening. I live in Ks but am willing to travel to find a doc who can tell me what is going on. I have also had gallstones. I am just a stone maker. Hate it. I also drink around 3 liters of water a day.
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I have been passing kidney stones recently. I have had them for a decade or more but only recently started to pass them. I have an appointment next week with my urologist. I also follow up with a psychiatrist whom I have an appointment with next week but overall I am stable. However, every time a kidney stone starts to pass I encounter extreme psychosis and depression. Once they pass and are eliminated this settles.
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I have a kidney stone lodged at the bottom of the right ureter pole near my bladder that won't pass into my bladder. I have been dealing with the pain of this stone moving for several weeks. My urologist say it is small enough to pass (4mm). Meanwhile I'm on pain meds and anti nausea medication. My health insurance kicks in January 1st and if it hasn't passed by the my doctor will remove it. I understand that process is as uncomfortable as the stone's movement. I have esophageal lesions and a gastric ulcer so drinking anything with lemon juice to help the stone pass is unheard of. (I read some people do that). My worst pain is in my back at the area my doctor calls the right flank; and also lower. I am also having pain in the front of my left side but I'm not sure if that's related. Has anyone had to deal with waiting for a stone to pass for this length of time. I'm miserable.
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About a year ago, I had a kidney stone, and stent put in. I thought the stent would help me pass the stone. The Dr. said that wouldn't happen, removed the stent 6 weeks later, saying he thinks I still have it. To my knowledge I have not passed a stone, people say if I did I would feel it. I am now having pain, like a kidney infection, am a little worried it could be this stone. The Dr. said it would make me really sick if I don't pass it. It does hurt on the left, where the stone was located, but not like before. I don't have insurance and can't afford another ultrasound. has anyone passed a stone with stent in place? I think I passed it when I had the stent and just have an infection.
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I'm a 17 year old male and about 3-4 months ago I had a lot of pain in my lower back. My fathers side of the family has a long history of kidney stones ( he just had a 14mm stone that had to be broken up). Anyways the doctors said that I have a kidney stone in my left kidney that is less than 1mm. That's not the side that bothers me, they also found a 2mm stone in my right kidney. They say this isn't causing the pain but yet I'm at a constant 7/10 on the pain scale off meds. On the meds it reduces to a 4/10 and the severe pain episodes are less frequent. I've been on and off the meds now for the last couple months but I dislike laying around like a vegetable... My pain episodes start with severe sweating and slightly higher pain levels. Then it moves on to excruciating pain that causes screaming or tearing up. Then I feel the need to use the restroom and the pain will then max out at a 10/10 on several occasions this pain has been so severe that it has caused vomiting to the point of dry heaves. I am considering having my parents take me to the hospital and demand that I have the stone removed upon my next episode of severe pain. I've never felt the testicular discomfort and I have been keeping up with about a gallon of water a day but my urine is still yellow and smes awful.. Does anyone have a recommendation on my next course of action? I'm ready to get this over with. I've had to cancel several meetings with my army recruiter due to severe pain that has prevented me from driving or the use of narcotics ( Tylenol codeine #3, percocet, endocet,hydrocodone) and alternative pain medications and antiinflammatories (Tramadol, mobic). I feel like my life is on hold.
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I was diagnosed with a 5mm kidney stone. I had a ct scan and was told it was close to my bladder and it would pass in a few days.after another episode of horrible pain I then began experiencing the urge to urinate constantly with not much output. I am pretty sure the stone has moved into my bladder but it hasn't come out yet.I am drinking a lot of water to try to flush it out. How long should it take to come out once it reaches the bladder?
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i have a 4mm kidney stone and i am using medicines when i masturbate no sperm is coming...
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I was in an automobile accident the 1st of april and was healing nicely until stomach pain became unbearable. I went to multiple hospitals, had enemas performed, painful exams...only for a doctor to finally order a CT scan and xrays to discovery my intestines are extremely bloated and slowed to nothing as well as a kidney stone having developed....my question is I'm currently drinking mineral oil to combat half the problem, but I was previously told to take dulcolax suppositories and am not sure if I should combine them with the mineral oil?
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