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Anyone else have chronic kidney stones??

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  • Anyone else have chronic kidney stones??

    I was dx'd with HyperPARAthyroidism in 2004. It was suspected 3 years earlier, but the numbskull Radiologist conducting my test was reading the pictures after 2 hours. A very quick moments online of research and I discovered they are supposed to read the test after only 10 MINUTES of injecting the Radioactive dye!! Uggghhh! The only reason I was finally dx'd at this point is due to consistent high blood calcium and outrageously high Parathyroid hormones.

    Instead of going through the Nephrologist again, my GP sent me to a Surgeon after the new Parathyroid scan and lab work. The Surgeon said I had a growth on at least 1 of the 4 Parathyroid glands and I needed surgery YESTERDAY to remove it. During surgery, he also looked at the other Parathyroids, but only found a total of 3; could possibly develop the disease again - especially being he couldn't find all the glands.

    Long story short, surgery was 12/2004 and all my conditions have slllooowwwllly, and I do mean ssllllooowwwlllyyyy, improved since then! However, removing the diseased Parathyroid was SUPPOSED to end my bout with kidney stones; Hyperparathyroidism causes massive amount of calcium to be sent through the kidneys, causing chronic stones. I've passed one 5mm stone (massive size in kidney stone terms!), had 2 Emergency surgeries for complete uretal blockage by 5 or larger stones, 1 surgery for an 11 mm stone that was still in the kidney, and continually pass 'gravel' on a regular basis!! Double ugh!! I currently have at least five measurable stones in the left Ureter, which I may or may not be able to pass. There are several stones of smaller size in the right ureter, too.

    Kidney stones have been an almost monthly ordeal to some extent since 2004, despite the parathyroid surgery and taking "Procit-K" daily!!!! Ironically, the IC pain has lessend to a great degree! I have no idea if it's related, or if it's just a thing of time removed from the most horrible, horrid, SUICIDAL pain of IC that I had for the early years of the disease. My IC was in advanced stages when finally dx'd and I'm currently on no particular treatment or seeing anyone for it! If I dare mention IC to my Uro when there for a kidney stone related visit, he says, "Now Sherry, we're not here about that problem today." !!!! What a twerp!! Good thing my IC has quieted down or I'd be "up the creek", Huh?!?!?!

    Just wondering if anyone else has dealt with chronic stones, along with IC? Any others with Hyperparathyroidism?? Just curious and do you want to share your story of these?

    All the Best,

  • #2
    I am so sorry for all you have been through..((((((hugs))))))))
    I know the pain you are talking about, I also get kidney stones the last time I has 4 at one time all about 2c, I would have died if they were bigger a 2 was bad enough.. I didnt have that much pain from labor...
    The only thing that I find that helps is lots and lots of water, If I slow my water intake then I usually get one..
    I hope you get to feeling better soon.. If you need anything just let me know..

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

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    Diet Reference Sheet:

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.