I have some questions concering the new "condition" that I was recently given by my Urologist...hoping to find some others out there who have gone or are currently going through anything similar.
My kidney stone history in brief summation...I'm a 39 year old female who has now suffered through at least 2 cycles of kidney stone formation twice a year for going on ten years. Each and every time it has been multiple stones in both kidneys. This year was different though...instead of a fall/winter episode(s) I began having the tell tale pains in summer. I had a scan which showed several stones in both kidneys...but the right side seemed to be giving me more grief. My Doc did a Cystoscopy and removed all he could...but also informed me he found Randall's Plaque. He said he couldn't remove the plaque in fears of causing damage. I completed a 24 hour urinalysis and they found my urine output was below par (1600 mL and he likes to see near 2000 mL)...my Citrate was very low (mine was 91 mg/day where it should be >=285 mg/day). I also noticed that in the Protein section of the results it says:
Urine total protein is below assay range of instrument (6.0 mg/dL)
Unable to calculate reportable result for 24 hour specimen
Urine total protein referrence range 0-149.1 mg/day
Result may be abnormally high if total volume is >3000 mL
My questions would be has anybody had or actually has Randall's Plaque? What exactly causes it and if the lack of Citrate is the cause what would be making my Citrate levels so low?
One more question...and I apologize for such a long post...does anybody else have incredible pain even though the stones are still in the kidneys? I guess he feels I can pass the multiple in my left kidney without surgical assistance...but wow...it hurts so bad even when I get a break between them!
The following user gives a hug of support to WendyDT: Ironthumz (09-22-2011)
Your story sounds very familiar to me. I have a great deal of knowledge in relation to kidneys stones from a personal stand point. I was diagnosed with Randall's Plaque last year and have been struggling with severe pain for the past two years. Of course all of the CT scan only show stones in the kidney and none in the ureters. My Urologist is adament that stones in the kidney can not cause pain. However looking at it from a anatomy stand point I disagree. If the kidneys swell within the fascial capsule (connective tissue) it lives in it will cause pain at the connection points on the ribcage, abdominal connective tissue and in the ureters. My Urologist does not agree with this and states hydronephrosis(swelling of the kidney) is not painfull. I agree that slow acting hydronephrosis is relatively pain free but fast swelling will activate the pain fibers in the connective tissue. I typically only have pain relif within 24hrs of a cystoscopy but the ureter and kidney pain is usually right back anytime I have a full bladder.
Citrate is a substance that retards the clumping of calcium and oxalate which in turn is believe to be the mechanism in clacium oxalate stone formation. Total protien plays a role in this but I have not been able to figure it out yet. My advice is to stay on a low oxalate and low protien diet.
Randall's Plaquing is a relatively new diagnosis or disorder and there is very little in the literature. I believe the standards of care for kidney stones do not apply to Randall's Plaquing simply based on my 20 years of personal experience with kidney stones.
In the past 20 years I have never had more than two weeks of pain with stones at a time even with 6-8mm stones. I have always been able to visulize the stones on CT scan or old school X-ray.
This is just not the case anymore. The stones are tiny at 1-2 mm and I have more kidney pain than ureter pain. My urologist believes I have pain but does not believe it is coming from the kidney or ureters. I know what kidney pain is versus back pain and the kidney pain is excruciating. Add some ureter pain and then some testicular pain and where do you go to get away from the pain. While I am frustrated with my Urologist I can not fault him for saying he does not have a reason for why I am hurting.
I believe we are generating a constant gravel of fine stones and 1-2mm stones that create pressure in the kidney expanding it in the connective tissue capsule creating kidney pain and radiating pain into the ureter.
I recently read about a herb called Chanca Piedra which is suppose to help reduce spasm and pain in the kidney and ureter. I will certainly try the Chanca Piedra which translates to stone crusher in native South American.
I know I am a little late to this discussion but I thought I'd throw my experiences in for others with the same issue.
I have had stones since I was 17. I would get a flareup about twice a year that was bad enough to send me in to the hospital due to the pain. About two years ago they became much more frequent and there also was an added constant level of discomfort.
The next time I was in Emerg. they sent me for a CT which showed rather a lot in there so I finally broke down and went to a Urologist. He decided to do a laser lithotripsy procedure (laser with a camera inserted up the urethra, Pew Pew!) when he got "up" there he found that most of them were attached plaques and was unwilling to try and detach or break them up due to the danger to the kidney its self.
By the way, this procedure is very uncomfortable and was worse then the stones had been for about 2 days afterwards.
The Urologist discussed this with me and basically said that there is little that can be done other then a low oxalate diet and drinking plenty of fluids. (I aim for about 6 L a day.) He also told me that discomfort and pain are not uncommon as the plaques can crack and nick the interior of the kidney, which hurts in a similar fashion to passing a stone though a little different. It is hard to explain but I can tell the difference between the two.
I rarely see the Urologist now as it really isn't necessary as there is nothing he can do. My GP has taken care of pain management with a combination of Nortriptyline (30mg once daily before bed) and Cymbalta (30mg once daily) daily for the low grade pain (this is surprisingly effective). For acute pain (When it's really bad it is Diclofenac (AKA Voltaren) (30mg up to three time daily) and Hydromorphone (AKA Dilaudid) (4mg every 4 hours when needed) This is usually enough to beat the pain into submission though from time to time even this isn't enough and in to Emerg. I head for IV Hydromorphone.
I have been on the diet for a little over a year and there has been some reduction in the frequency of the acute attacks but I have not noticed a reduction in the chronic pain.
In the grand scheme it really ins't the worst thing that could happen. I'm not dead and this isn't going to kill me.