Recurring Kidney Stones - ESWL Complications

[weturner_2001]

ESWL Studies - Frequent Kidney Stones

Hi,

My husband is a 30 year old frequent kidney stone producer.  He had his first stone at the age of 18 and since that time has averaged at least 1 surgery a year for unpassable stones while passing small stones and grit on a regular basis.

He produces calcium stones and has both hypercalciuria and low levels of citrate.  We have had 4 to 5 different urologists in the last 7 years as we have had a hard time finding someone we like.  

Last year my husband had a eswl treatment and was back in the hospital within 2 hours of release due to a hemorrage.  Since then he has had fairly constant left kidney pain (the side that particular eswl was done to).    We don't know what happened with the treatment has he had many eswl surgeries over the years.  Now his urologist is afraid to do the surgery and he currently has 5 stones in the left side kidney (including one 11mm).  

He has had constant nausea, dull pain and stabbing pain for weeks so finally went back into the urologist who had a CT and xray ordered.  The urologist told him that he shouldn't be in pain as the stones are all still in the kidney and he doesn't want to do surgery since the last surgery went so poorly so basically shrugged us off with no game plan.  He of course doesn't want to prescribe pain killers either as he 'doesn't see a reason' for the pain.  This was last Friday, Saturday my husband felt a stone on the move and felt it move into the bladder and then passed a 4 mm stone Sunday morning.  This was not one of the stones seen in the xray/ct so not sure how they missed it (it is my understanding depending on where the stone is it may be hidden by bones).

So first off, I would like to know if there are any clincal studies out there are frequent eswl treatments.  I find it hard to believe that 1 to 2 surguries a year for 12 years so far is not causing some type of kidney damage and thus caused the last eswl hemorrage.  My husband doesn't usually check his blood pressure but I know the last 3 doctor visits his pressure was high on each visit, we chalked it up pain (which again his doctor said he sees no reason for him to be in pain but I am wondering if he really has kidney damage).  Also, with the last eswl they actually bruised his left lung.

Second, can anyone recommend a good urologist or nephrologist in the Seattle area?  I just made a appointment with a doctor at Virgina Mason, hopefully it will be someone we like.

Third, we have went through years of medications including up to 8 pills a day of potassium citrate and diurectic combination but it didn't stop the kidney stone creation or even hamper how many he produced.  We have NEVER had a doctor try to find a root cause.  There is no 'name' for what he suffers from and everyone wants to treat the symptom instead of the real issue.  Any ideas on what we should do about this?  We know he doesn't have gout, he has had several urine analysis's done, etc.

I have found the medical community to be a huge disappointment.  I seem to have a better understanding on what has happened, is happening and what might happen then some of the 'experts' we have seen.  We have literally had doctors ask how he knows he has a kidney stone, which I am sorry if you pass them on a constant basis YOU KNOW.  You know when its in the kidney, you know when its in the tubes or in the bladder.. you just know.  

The urologist hasn't ran any tests since the last eswl nightmare to determine why he keeps having left kidney pain, any kidney function tests, any plan as to how to handle the next surgeries or anything.  

Sorry to sound so bitter, but this is such a frustrating process.  Not only does he have to deal with the physical ups and downs for each stone but then to have such a hard time finding a cause/treatment plan just makes it almost unbareable.  

Anyway, if you have any ideas on studies, tests or recommendations for a doctor please let me know.

Thanks.

[el_em_en_oh]

I've had numerous doctors tell me that stones INSIDE the kidney do not/should not cause pain... WRONG. I've been making stones since I was 18 (i'm now 39) so have been dealing with this issue for quite some time. Like your husband, I can tell when a stone is in my kidney, in my ureter, or in my bladder. I don't know how I know, I just DO. Over the years, I've become, like your husband, acutely aware of what that part of my body should and shouldn't feel like. Unfortunately for me, I'm not a candidate for ESWL's as my stones are too hard. I have cystinuria and make cystine stones. About the only way to get my stones out is for me to either pass them, or have them removed via PCNL or a laser-cystoscopy.

Doctors THINK that inter-kidney stones don't hurt and shouldn't cause pain, but they do. Not sure why no doctors have done more research into this, but until they do, it's pain medication for those of us that suffer through this.

If you happen across any research, I'm all ears!