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1 cm Kidney Stone in "meaty" part of kidney causing pain

Posted , 6 users are following.

shayannn89
shayannn89

I get stones frequently. I have had several lithrotripsies, uteroscopies, and stents. After my last uteroscopy, my urologist told me that I had a 1 cm stone embedded in the meaty part of my kidney. He told me that some patients will have pain and some don't even notice they are there. I thought after my stent was removed, the pain would ease up. It has been four days, and I am still having pain 24/7. My heating pad is my best friend, but I have a three year old and a full-time job so I am unable to use my heating pad very much other than when I go to sleep. Not sure if I can find someone with a similar issue who can give me any tips or tricks. Probably going to get back in touch with my doctor when his office is open again to discuss some sort of pain management plan.

0 likes, 9 replies

9 Replies

  • moltoncore
    moltoncore shayannn89

    Posted

    My personal opinion is that pain management sucks big time. We are talking meds. Either constant NSAIDS, which will mess with other organs or Opioids which will leave you in a stupor. I don't get it, is there no way to get that sucker out in some way?

    • shayannn89
      shayannn89 moltoncore

      Posted

      I really don't want to have to resort to meds on a regular basis, but I am getting pretty desperate. I feel like I have no other options left. The urologist told me that since it was embedded in the kidney, there was no way to remove it, and it would remain there for the rest of my life. He said that that the only way to remove it would be to cut it out of the kidney, and that was simply not an option because it would make the kidney bleed. I really was hoping after my last stent was removed that the pain would be more bearable than before the uteroscopy, but it seems as if the whole procedure was pointless.

    • sharon43997
      sharon43997 shayannn89

      Posted

      I am no doctor..but what he told you about it being there for the rest of your life just doesn't sound like solid medical advice to me. Ever thought about a second opinion? If the second doctor agrees..well, then you will know. Pain meds are fine to take when you can't find relief any other way. It's better to have them as an option than not having them at all. I see the problem as having difficulty getting the doctor to give the meds. Most have never had stones or they would understand the pain better. Most will say a stone that size shouldn't cause that much pain. My stones move constantly and thats when my pain gets tremendous. I would certainly try and get a second opinion. Hope things turn out well for you.

    • shayannn89
      shayannn89 sharon43997

      Posted

      It doesn’t make much sense to me either. I work at my local hospital in registration, and several of the staff have recommended getting a second opinion. Most of my stones are generally small and only 8mm and larger have given me problems and required outpatient surgery as this one ( I believe it is the largest I’ve had yet) would require to be removed  until they realized it was inaccessible without cutting into the kidney. I’ve googled myself crazy with only finding a handful of people with the same issue; each one also said that their doctor also said that once embedded there was no way to remove the stone. Thank you smile
  • sarah87162
    sarah87162 shayannn89

    Posted

    I feel for you.

    Not sure where you live.

    I had kidney stones all last year and was referred to 4 different urologists before one urologist agreed to operate.

    Mr Frank Keeley at Southmead Hospital in Bristol.

    If you live anywhere near Bristol he is worth his weight in gold. Sorted me out.

    Hope you manage to get some relief.

    Take care and keep in touch.

    Sarah xxx

  • MrsO-UK_Surrey
    MrsO-UK_Surrey shayannn89

    Posted

    It's still early days following your stent removal so hopefully things will gradually improve.  However, my hubby recently had a spell in A&E and then the Surgical Assessment Unit, in dire pain.  A CT scan revealed a 6mm stone stuck in the ureter.  They sent him home with painkillers in the hope that he would pass it.  We weren't convinced, especially after hearing from someone who kindly replied to my post asking for help that the ureter is about 6mm wide!    But after a week or so of intermittent severe pain he has now been pain-free for about 3 weeks.  He has a follow-up with the urologist at the end of this month so fingers crossed.  What I did recommend him to do at the time, and which he is still doing, is drinking several glasses of water a day with a slice of fresh lemon squeezed into it.  Apparently this can at least help to stop the stones forming in the first place but also may have played a hand in breaking the stone up and flushing it through.  His most successful painkiller at the time was Buscopan. Hope this helps.

  • LoveCorgis
    LoveCorgis shayannn89

    Posted

    I have had stones for 28 years.  (I actually just got out of the hospital yesterday after a 5 day stay and surgery yesterday).  I've had more lithotripsies, cystoscopies,ureteroscopies,  etc, than I can count.  Most doctors will not go after a stone embedded in the kidney.  It can damage the kidney, and you really don't want. 

    I am a mass producer of stones.  At one point, I had a surgeon who did go into my kidneys and just dug out the stones embedded in the walls of my kidney.  I think he did it due to the frequency of my surgeries.  Now, I have deep pockets in both kidneys (along with scar tissue).  When my current surgeon goes in for my scheduled "cleanings" - she can see the stones sitting in these pockets, but she can't access them without causing more damage.  The result of this is I always have pain.  Both from the damage to my kidneys, and all the stones sitting in there.  Also, despite my surgeon cleaning out my kidneys every 3 months, she can never get my kidneys totally clean due to all the stones sitting in those pockets.  So I am never stone free.  For example, 3 weeks ago, I was cleaned out.  Like I mentioned earlier, I just got out of the hospital because I was obstructed again despite just having both kidneys cleaned.  That is why doctors don't really want to go digging in your kidneys.  I get that it's frustrating - but living on the other end of it - you don't want to wind up like me.

    I'd suggest drinking a lot of water.  See if you can get a script for Flomax.  It will open up your ureter.  And as much as doctors hate prescribing pain meds - there is no reason you should live in pain.  If your doctor doesn't want to treat your pain - find a doctor that believes you.  Most urologists say that when the stones are in the kidney, they do not hurt.  Generally that is true.  However, sometimes they can cause a colic like pain or they spasm.  It's not comfortable.  Have you tried peridium?  Usually they only use that with stents - and I swear it's a wonder drug.  I'm not sure if I've ever tried it just for spasms in the kidney.  Maybe your doc can try that for you.  But there is no reason you should be suffering.  Good luck! 

  • LoveCorgis
    LoveCorgis shayannn89

    Posted

    Thanks shayannn!  I hope you get some relief.  I totally understand how frustrating this is.  There is absolutey nothing worse than stone pain - except maybe doctors that don't want to treat the pain.  I will say that I've lucked out with doctors that are not afraid to prescribe pain meds.  When I was 16 and first started passing stones, my very first urologist told me that if I was going to keep passing stones I'd have to 'learn to live with the pain'.  I simply laughed at him and told him to pack up my records that I was transferring to a new hospital.  I also asked him if he had ever passed a stone.  He said no, but they taught them in medical school it was one of the most painful conditions known to man.  I told him that I should not have to learn to live with the pain and that I hoped if he ever got one that he was treated the way he was treating me.  I then found myself a compassionate surgeon and have been treated well since.  No one should have to suffer

    Really though, try to get a script for Flomax (I take it every day of my life), and also Pyridium - which should help open up the ureter.  Even though your doc said the stone will sit in the kidney forever - there is nothing to say it will.  It could just as easily decide to pass tomorrow, next week, next month or never.  There are also preventive meds you can take, which will also help you (hopefully) stop producing more. 

    I'm probably not telling you anything you don't know.  On the off chance I am - I hope it helps!  confused  And I hope you got through to your office and they provided you with something to help with your pain. 

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