Hi and Welcome ....
I have a condition called MSK (medullary sponge kidney) so have had a tremendous amount of experience with stones, ultrasounds, CT Scans and what I feel versus what I should or should not be feeling. However, I am NOT a doctor or a medical professional so what I write is from my own experience only or those who also post on our MSK community here at MedHelp.
I passed a 3.0 mm stone on 11/21 and had an ultrasound on 11/22 that showed no more stones at all anywhere. And for 2 weeks following each week passed a 2.0 mm stone. I share because this may be helpful as you trust your instincts and continue to work with your doctor in this regard. Although my ultrasound was done and not a CT, which is less reliable I think.
To answer your question I always feel pain .. pings/pangs in my kidney as my stones move around (even tiny ones) and for me I become aware something is up and may be on the "move".
Did they test her Gallbladder? You don't have to have stones to have gallbladder pain which , for me, seems very similar in the beginning.
Have they done a 24hr urine study? Parathyroid tests? Thyroid tests? Also, do you know what type of stone it is?
Feel free also to PM me .. either way works.
Good Luck ... my stones started undiagnosed at age 16.
MSK with Stones
I also have MSK and my early experience with kidney stones is very similar to what your daughter is going through. In 1987 when I was 14, I started having incredible pain in my upper and lower back. My mother took me to our family doctor, and it was determined that I had a UTI. I was put on antibiotics, but they did nothing for the pain. I remember laying in my bed, crying my eyes out and telling her something was really wrong. She took me back to the same doctor again and he told her I was "faking it" to get out of going to school. I don't remember all the details now as that was many years ago, but somehow I got a referral to a urologist.
They did an xray and found a very large kidney stone - it was the size of a quarter. At that time, lithotripsy was a fairly new procedure where we lived. I was scheduled for one and had the surgery. I was one of the first patients to have the procedure done, and I was the youngest my doctor had performed it on. I had pain off and on for years afterwards and many UTI's and bladder infections, but was stone free until I got pregnant with my third child in 2005. Since then I have had at least one very large stone every year or two and have had multiple surgeries.
From my personal point of view, the doctors do not yet understand all of the complexities that exist for people who suffer with multiple stones. I too suffer with severe pain every day, even when I don't have any stones. This is part of having MSK though. The kidneys are basically "hardening" from the calcifications that build up and have to work harder to function.
It makes perfect sense when you think about it - you have a foreign object in a vital organ, of course it's going to be extremely painful. The kidneys have nerves in them just like every other organ in the body. Why doctors don't understand this I don't know. If you go to the forum on here for MSK (medullary sponge kidney) you will find that all of our symptoms and stories are basically the same.
I hope this has helped you and your daughter, at least somewhat, and I hope she finds some relief soon.
Thank you both for your information. It is always nice to hear from others who have kidney stones, and know what it is like. Thankfully my daughter hasn't had anymore pain right now, which again only makes us think it was the stones. The way it comes on suddenly and goes away just as quick. We are still trying to get her to push her fluids, and for now just know if the pain starts up we at least know what we are dealing with.
She hasn't done a 24 hour urine, however they just ordered one. So we will be doing that soon. She has done other urine tests that her nephrologist ordered that had slightly elevated calcium. So we'll see what the 24 hour urine shows.
Thank you again. It gets frustrating when a doctor is telling you what is in the textbooks about kidney stones, especially when it is something that you have already lived through before and you know what the experience was like then, and are pretty confident that is what is going on again.
They haven't checked her gallbladder at all, and I guess for now as long as she is having the pain in the same location as the stone, we are fairly confident that is what is causing her the pain. But I will definitely keep that in mind.
Thank you both again, and I might be asking more questions if/when her pain returns.
Yes, gallbladder I think is typically on the right side under the rib (for me at least) but it does shoot intense pain up through the shoulder blades in the back and/or around the flank area in the back, too.
What made me bring up Gallbladder was the amount of time she had for each episode and then it subsided. The short duration falls into similar Gallbladder "attacks" that I've had, but Kidney stones can come and go with renal colic, too ..
Does it hurt the next day anywhere?
Adding this post to add the thread to my "watch list" ...
That makes since about the gallbladder. Her pain always stays in the one location on her back, near the kidney. Until it is on the move anyway.She hasn't ever had the pain radiate up to the shoulder blades. But I will watch out for that, and if that symptom ever came up I would have them check her gallbladder.
When she has these episodes she is usually sore the next day, all over. She feels exhausted afterwards too, it takes out a lot of energy when she is in so much pain.
Thanks again for your input. I really feel you can learn more from others who've gone through this.
We hadn't had a family history of kidney stones. However my niece has them now, and my sister. So I am thinking maybe there is something hereditary going on. We have many autoimmune disorders that run in our family, so we are use to seeing various things come up.
What exactly is MSK? When were you diagnosed with that?
ChitChat is correct, the gallbladder is located on the right side, under the ribs. They checked mine on a recent visit to the ER, but it came back fine. I personally haven't had any issues with it, but my sister had a really bad gallbladder attack several years ago along with a kidney stone that got imbedded in her kidney. This was the first (and only so far) episode that she's had with stones, and she was in the hospital for almost 2 weeks. My mother also had a stone several years ago. It was very small, but she ended up apologizing profusely to me for not believing me about the pain when I was 14. She passed the stone and hasn't had one since.
I found out that I had a distant relative that died from kidney failure, I had an aunt that suffered with stones before dying from pancreatic cancer at 44 years old, and I have at least one cousin on both my maternal and paternal sides that have them. I am the only one out of all of us that has been diagnosed with MSK. Although I'm not sure if the current research supports my theory, I definitely think it is hereditary.
To answer your question about MSK, this is what I've found from my research -it is a birth defect that usually isn't diagnosed until 30-40 years of age (although I ran across a member the other day that is 21 and was just diagnosed). It's considered to be a benign disease. The tiny tubes in the kidneys that filter urine do not form properly and cannot function correctly, so the urine backs up in these tubes and crystalizes into what is called "calcifications". This also causes stones to form. Sometimes the stones are very small and are able to pass thru on their own, and other times they are much larger (like in my case) and require surgery to remove. My urologist explained it to me like this: if you look at the point of a ballpoint pen (where the ink comes out), that's about the size of the tubes that extend off of the kidneys and lead to the urinary tract (ureters I think they are called). There isn't much that's going to pass through there unless it's in liquid form. The stones are sharp and jagged, and sometimes get stuck along the way. This causes severe pain. The body works harder to try to "flush" out the stone and that's probably the reason for the pain and fatigue later.
I hope you find some answers from the 24 hour urine. I'm curious - have they ever done an IVP on your daughter? The process of getting ready for the test isn't fun at all (you have to flush your system first), and then they inject dye into the kidneys and take multiple xrays to see what's going on inside the kidneys and they can also tell if they are draining properly. My calcifications show up very well on xray and CT without needing the dye, but it was just a thought. Maybe something to discuss with your Nephrologist to see what he/she thinks. Good luck!
How long do they wait before doing surgery to remove stones?