Posted 12/18/2012 12:43 PM (GMT -7)
Hi ... I'm just registering because I'm at a loss for my issues with kidney stones. I first started having problems with stones around May of 2009. Before this, I was taking Topamax for migraines. After losing too much weight and having too many problems with the side effects, I quit taking it. Not long after is when the kidney stones (another side effect of the drug) started.
I had bilateral stones ... about 15 in each kidney, ranging from 2mm to 5mm. My doctor explained that because of my size, my ureters were a bit smaller than the normal person, which made smaller stones that don't normally cause much pain feel like they were much larger.
I first had a ureteroscopy with a stent kept in for about two weeks. The stent, for me, was more painful than the stones. I spent an entire month in bed having and took whatever I could to stay asleep throughout that time. I couldn't eat and even though I needed to drink water, it was hard, because each time I went to the restroom, my kidney would spasm (despite having medication to help that).
A few months later, I did lithotripsy on the opposite kidney. No stent. I was able to walk around and just had a bit of flank pain for a week and pain whenever the stones would pass. I had many fragments pass very quick.
Now, sense that time, I've felt the pain of a stone, but it would subside before causing any issues. That was until September of this year. I had major flank pain on both sides out of nowhere. I had to get to the ER. A CT showed lots of bilateral stones again, though none were obstructing. I had the ER doctor tell me, "That shouldn't hurt. It has to be something else." I explained that I had this before and it's the exact same pain.
I see my urologist soon after and he had me getting lithotripsy the next day on my left kidney (which hurt more). Lots of stones pass, that side feels better. A couple weeks later, we set up the right side lithotripsy. For some reason, that one only seemed to loosen up the stones and make them worse. I ended up in the ER on a weekend and there was a large obstructing stone (and already more in the left kidney). I went back to the urologist and asked if he could do a ureteroscopy without the stent. He said it's not that good of an idea, but did it for me. He was right. My ureter ended up swelling and fragments got stuck. He did an X-ray and said he didn't see any stones, but an IVP showed the dye was moving very slow. Another ureteroscopy, this time with a stent.
This time, my urologist told me that I had formed a 7mm stone between the two procedures. The stent was painful, the removal was horrible ... but I supposedly was clear on the right side now.
This was only a few weeks ago and I'm having issues again. He did a blood test and I turned in a 24 hour urine sample yesterday. The blood test showed my parathyroid levels were normal. I was really hoping that was the problem, because I had so many of the symptoms and it seemed like such an easy solution to fix that. In the meantime, I am now taking Cytra-2 (my stones are calcium oxalate). I was given a pill, but it was too big for me and I needed a liquid. I'm also taking Levsin SL when my kidney starts with that twitching nonsense that always comes before pain. I have been taking pain medication off and on since this started in September, but I'm trying to take it only when I need it really bad because I don't want to risk needing it all the time. Sadly, I actually feel like I am needing it more than not ... but I'm just taking a lot of Motrin instead.
The reason I'm posting this is I'm hoping someone who has had chronic stones might have found what the main issue was or that they have found a medication that helps. I know everyone is different when it comes to kidney stones, but I'm open to any suggestions. Plus, I just needed to vent to others who understand what I'm going through. I'm spending a lot of time stuck in bed on a heating pad or in a bath, hoping for this all to subside. In four months alone, I've had four procedures and four ER trips. I'm lucky that I have good insurance, but the constant IVs and doctors are starting to take their toll on both me and my family.
I have a follow up appointment for an IVP in almost exactly one month, but I'm not sure what to do until then since I still have some passing. I'm worried about the holidays when my urologist won't be there, too. I'm completely at a loss right now and it has made me extremely depressed.