firewatcher Posted May 17, 2012 Report Share Posted May 17, 2012 World J Pediatr. 2012 May;8(2):116-22. Epub 2012 May 10. Newly-identified symptoms of left renal vein entrapment syndrome mimicking orthostatic disturbance.Koshimichi M, Sugimoto K, Yanagida H, Fujita S, Miyazawa T, Sakata N, Okada M, Takemura T. SourceDepartment of Pediatrics, Kinki University School of Medicine, Osaka, Japan. Abstract BACKGROUND:In addition to the urinary abnormalities, symptoms of left renal vein entrapment between the aorta and superior mesenteric artery (left renal vein entrapment syndrome, LRVES) may include abdominal and flank pain as well as chronic fatigue. We investigated various LRVES symptoms in this study. METHODS:In 53 pediatric LRVES patients treated at our department, 22 had a score of 5 points or higher on orthostasis. Initial evaluation of LRVES by abdominal ultrasonography showed a stenotic-to-prestenotic vein diameter ratio of 0.2 or less. Definitive diagnosis was made by computed tomography and magnetic resonance angiography. Cortisol, catecholamine (CA), and brain natriuretic peptide (BNP) were also measured. RESULTS:The frequency of LRVES was 2.5 times higher in girls than in boys. Low or very low body mass indexes were seen in both sexes. The most common initial finding was urine abnormalities, followed by dizziness and malaise. In 6 patients, orthostasis precluded school attendance. Ten patients had orthostasis scores above 12. Patients unable to attend school had either low levels of plasma or urinary cortisol. Midodrine significantly decreased orthostasis scores. Some patients required treatment with fludrocortisone. Plasma CA, renin, and BNP levels were all normal. CONCLUSIONS:Locally excessive venous pressure may cause reversible adrenal dysfunction with transitory Addisonian symptoms. Children with cryptogenic malaise or severe orthostasis should be evaluated for LRVES. PMID: 22573421 Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted May 17, 2012 Report Share Posted May 17, 2012 thanks ... I had to google this so here it is .. http://en.wikipedia....wiki/Renal_veinhow do we get evaluated for things like this ? Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 17, 2012 Report Share Posted May 17, 2012 Is this like Nutcracker Syndrome? I have a renal vein narrowing, but the radiologist didn't think it was enough to cause a problem. It's something I've wanted to look at again. Thanks for posting. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted May 17, 2012 Author Report Share Posted May 17, 2012 The doctor has to suspect this to look for it. An abdominal ultrasound while standing and supine looks like the diagnostic test to evaluate for this. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted May 17, 2012 Report Share Posted May 17, 2012 The doctor has to suspect this to look for it. An abdominal ultrasound while standing and supine looks like the diagnostic test to evaluate for this.WOW .. I've never had this test. Is it the norm for OI ? Any chance of getting a bodywide standing ultrasound ? Quote Link to comment Share on other sites More sharing options...
firewatcher Posted May 17, 2012 Author Report Share Posted May 17, 2012 No clue! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 17, 2012 Report Share Posted May 17, 2012 Here is a link to one post I did a year ago on an article very similar to the one above:http://forums.dinet.org/index.php?/topic/16759-nutcracker-syndrome-revisited/page__hl__%2Bnutcracker+%2Bsyndrome__fromsearch__1There could be something to this. Especially if, as Firewatcher said, you can get the imaging done upright. I have to see my gyn tomorrow, and she's probably going to order an ultrasound for gyn issues, so I may see if she might want to look into this. Can't hurt, right? Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 17, 2012 Report Share Posted May 17, 2012 Another link to this from 2010. And why are the POTS doctors not routinely imaging for this?? This is the kind of thing that makes me mad, when the "new" thing for POTS is exercise, but they fail to do some simple imaging that might find a true cause for some.http://forums.dinet.org/index.php?/topic/16047-ok-something-really-interesting/page__hl__nutcracker__fromsearch__1 Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted May 17, 2012 Report Share Posted May 17, 2012 Surgery worked for this too ... *** ?http://www.ncbi.nlm....pubmed/19193424What's with all the cutesy names here too. Grinch and now this ? I guess it's ok for me to call them bozos then ... lol ... Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 17, 2012 Report Share Posted May 17, 2012 Interesting...I have had periodic flank pain since I had the emergency kidney stone removal 3 yrs ago but they never find additional stones or any scarring from the surgery. Now that I think of it, the pain only occurs when I'm standing and is often occuring at the same time I have presyncopal symptoms. Because I was having so much abdominal pain during the same time frame, I don't really know if I was having the flank/kidney type pain prior to the stone and just chalked it up to more abdominal pain. This is definitely another line to look at for me. Thanks for posting. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted May 17, 2012 Report Share Posted May 17, 2012 Here is a link to one post I did a year ago on an article very similar to the one above:http://forums.dinet....__fromsearch__1There could be something to this. Especially if, as Firewatcher said, you can get the imaging done upright. I have to see my gyn tomorrow, and she's probably going to order an ultrasound for gyn issues, so I may see if she might want to look into this. Can't hurt, right?go for it ... i'm going to ask my doc for this too. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted May 17, 2012 Author Report Share Posted May 17, 2012 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2878259/Mayo clinic article on nutcracker syndrome..."The frequency and severity of the syndrome vary from asymptomatic microhematuria to severe pelvic congestion.30,33 Although some patients have severe and persistent symptoms, many, especially children, are asymptomatic.30,34,35 Symptoms are often aggravated by physical activity22 and commonly include hematuria, pain or gonadal vein syndrome,36 varicocele,8,22,36,37 orthostatic proteinuria,19,38-46 and orthostatic intolerance.5,47..." Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 17, 2012 Report Share Posted May 17, 2012 You know, I was thinking when they do CT scans to look for this stuff, they always make you put your arms above your head. How does that mimic real life?? What if the lifting of the arms lifts the pressure off of the renal vein and they don't see what it is really like when your arms are down by your side? Maybe the imaging is missing some or alot of people with this. Just food for thought. Has anyone ever been allowed to keep their arms down during a CT scan? Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted May 17, 2012 Report Share Posted May 17, 2012 I've had trace amounts of blood in my urine almost constantly since 1990 when I became ill with ME/CFS/OI. This gives ways of finding this out ...Notice the date ...http://www.ncbi.nlm....pubmed/100745881998 Sep;32(3):E3. Gross hematuria of uncommon origin: the nutcracker syndrome.Russo D, Minutolo R, Iaccarino V, Andreucci M, Capuano A, Savino FA. SourceIstituto di Scienze Radiologiche, School of Medicine, University "Federico II,", Naples, Italy. sbf004@sbf.it AbstractLeft renal vein hypertension, also called "nutcracker phenomenon" or "nutcracker syndrome," is a rare vascular abnormality responsible for gross hematuria.The phenomenon is attributable to the idiopathic decrease in the angle between the aorta and the superior mesenteric artery with consequent compression of the left renal vein.The entrapment of the left renal vein is not easily detectable by ordinary diagnostic procedures.We report two cases of gross hematuria (persistent in one patient and recurrent in the other) caused by "nutcracker phenomenon."In both cases no remarkable findings were obtained from medical history, urinary red blood cells morphology, repeated urinalysis, pyelography, cystoscopy, or ureteroscopy. Left renal vein dilation in one case was found with a computed tomography (CT) scan performed on the venous tree of left kidney. The diagnosis of "nutcracker phenomenon" was confirmed by renal venography with measurement of pressure gradient between left renal vein and inferior vena cava in both cases.In one case, the diagnosis was complicated by the presence of Mycobacterium tuberculosis in urine. The "nutcracker phenomenon" is probably more common than thought.Early diagnosis is important to avoid unnecessary diagnostic procedures and complications such as the thrombosis of the left renal vein. Many procedures are available to correct the compression of the left renal vein entrapped between the aorta and the superior mesenteric artery: Gortex graft vein interposition, nephropexy, stenting, and kidney autotransplantation. After surgery, gross hematuria ceases in almost all patients. Quote Link to comment Share on other sites More sharing options...
issie Posted May 17, 2012 Report Share Posted May 17, 2012 I actually addressed this with the nephrologist at Mayo. He said they could do a sonogram to look for it - but, he said he thought it was too risky to do surgery on and you could wind up losing a kidney. So, he said that he didn't see the point in doing the test - but, would if I wanted him to. But, I would have to find someone else to do the surgery if that was the case, because he wouldn't do the surgery. So, I dropped it. I have trouble lying on my left side and have lots of pain in my kidney area and lying on that side makes things worse. So, that nutcracker syndrome thing - seems to fit with me - but - I guess I won't know at this point. Maybe, less risky surgeries will become available and I'll look into it again at some point down the line.Issie Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 17, 2012 Report Share Posted May 17, 2012 Having thought about this... a problem occurs to me. What if they do find it? Does it mean it's causing the POTS? According to the articles you can have this and be asymptomatic. But so many things can cause POTS (apparently) - what if someone just coincidentally also had this renal vein issue? And if as Issie said, the surgery is risky - would it be worth the risk on a maybe? I guess you'd need a Dr. very familiar with this problem to figure it all that out. I'm not sure how many have even heard of this. Quote Link to comment Share on other sites More sharing options...
issie Posted May 17, 2012 Report Share Posted May 17, 2012 Yeah, I guess that's what the doctor was telling me. "IF" he found it, he wouldn't do anything about it and he didn't feel like I needed to pursue it. He felt it wasn't worth taking the chance of losing a kidney.Issie Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted May 17, 2012 Report Share Posted May 17, 2012 Can anyone think of a non surgical way to address this since laying down takes the pressure off ? Yoga ? Certain exercises ? Upside down traction ?I'm not so sure it's not worth risking losing a kidney .. My life is on hold. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted May 17, 2012 Author Report Share Posted May 17, 2012 There is this article:http://www.ncbi.nlm.nih.gov/pubmed/22575480"The clinical symptoms related to NCS almost disappeared at 3 months after the treatment. All stents were patent at the duplex scan examination, without restenosis, and no secondary recurrence of the symptoms occurred at the end of the follow-up. CONCLUSIONS: Endovascular treatment is a safe, effective, and very minimally invasive technique that provides good long-term patency rates for patients with NCS, and under the premise morphologic measurements, 14-mm-diameter, 60-mm-long self-expanding stents should be first considered for Chinese patients with NCS." Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 17, 2012 Report Share Posted May 17, 2012 Well, that doesn't sound so bad. I still intend to take a second look at this because I've had blood in my urine for years, plus the OI - you never know... Quote Link to comment Share on other sites More sharing options...
issie Posted May 17, 2012 Report Share Posted May 17, 2012 Yeah, that doesn't sound too bad. I wonder why he acted like it was so dangerous. Maybe, a visit back to "a" nephrologist should happen again. Not sure I'll go back to this one. Issie Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 17, 2012 Report Share Posted May 17, 2012 Issie, maybe do find another nephrologist just so you can have that second opinion. Maybe I am not thinking clearly on what it is doing, but I was wondering if it would actually do more damage to the kidney with all that back-flow pressure from the compressed vein. I know this blocking ends up backing blood flow throughout the pelvis, causing pelvic congestion syndrome. Anyone have that? I definitely did with all three of my pregnancies. I do wonder if I still have it. Quote Link to comment Share on other sites More sharing options...
issie Posted May 17, 2012 Report Share Posted May 17, 2012 Sue, that's a good question. It makes you wonder.Issie Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 17, 2012 Report Share Posted May 17, 2012 Maybe I am not thinking clearly on what it is doing, but I was wondering if it would actually do more damage to the kidney with all that back-flow pressure from the compressed vein.Well, I'm definitely not thinking clearly! What might do more damage - the condition itself or trying to fix it? Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted May 17, 2012 Report Share Posted May 17, 2012 I wonder what role age and general health have in deciding who gets this surgery. Would itbe worthwhile for an older patient ? I'm 56 with multiple autoimmune disorders.Sue, I don't have pelvic congestion syndrome. Quote Link to comment Share on other sites More sharing options...
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