Nutcracker syndrome?!!! My boyfriend had something to say about that...

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Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 5/7/2009 3:12 PM (GMT -6)   
What else? well, got my cd of all my imaging studies from mayo for the neuros and whomever else around here I'm going to, as I'm sick of mayo.  They did not tell me that I had nodules on the left side of my thyroid, screwed up the cancer test, didn't tell me I had a pinched nerve, or a retroaortic renal vein--nutcracker syndrome.
It had to be me, and rare. It can lead to nephrotic syndrome and is probably why my left kidney is bigger and my left leg is so painful and swollen and my left flank hurts and it has hurt to pee for over a year now.
I kept telling them that it felt like something was "strangulated", I just didn't know how to describe the feeling. So now I have to see if a doctor will find me worthy of surgery to prevent future problems, my liver being bad, don't need a bad kidneyor two. Right now, my right kidney compensates, but the pain and the leg problems are keeping me from walking much at all. I am pretty sedentary, which is very bad. 
My sis, an RN says the surgery really shouldn't be bad, they just put a stent in, cutting the large renal vein and placing it in front of the aorta instead of behind it. Docs think I'm nuts when I even mention it. They think I made it up.
It is a birth defect in me, the reason why I had an IVP when I was four and tons of kidney infections. Instead of the vein in front of the aorta becoming the renal vein, the back vein developed and the front one disintegrated. I was an embryo then, wasn't much they could do. So now I have like 15 things wrong and still no lupus diagnosis, though I think they'd rather just call it one thing, lupus, instead of all this crap, but they don't. And I'm lined up for injections in my back for the leg pain. That should be just peachy on the kidneys and adrenals, both of which are affected by the vein problem, but the docs "can only focus on the things that are in their field" and they said I need this, that it will fix the pain. I do need steroids, but would prefer a pill taper. I hate the up and down of injections. I have gone into addisonian crisis before, according to the ER here.
Oh well, only goes to show, it pays to get your own labs. My boyfriend said he knew I had nutcracker syndrome because I'd been bustin' his....well you can figure the rest.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

New Member

Date Joined Feb 2013
Total Posts : 1
   Posted 2/13/2013 5:30 AM (GMT -6)   

i have Nutcracker syndrome too. I am from germany and found your very interesting post. In one week i go to hospital for a renal vein stenting surgery. Your post is not even new so i suppose you already got your surgery. It would be very important for me to get some information about this. Does the surgery help, du you have problems or waht do you think is the best surgery- method?

I really have the same problems as you described, edema in the left leg, left leg, back and flank pain and a lot of problems with concentration and my memory. It is really hard for me that i cant do any kind of sports or other heavy activities.

My diagnosis is established with doppler ultrasound in form of a peak flow velocity in the nareinrowed portion of 181cm/s and 13cm/s in the left renal hilum. Additional a MRT with contrastfluid was performed wich shows a jammed left renal vein between the aorta and the SMA. In the upright position an pendulum flow was seen in the LRV.

My age is 28 and my Kidneys had already functional problems.

I would be really thankful for your experience with that problem and your surgery.

With kind regards,

New Member

Date Joined Feb 2014
Total Posts : 1
   Posted 2/9/2014 11:07 PM (GMT -6)   
I have been sick for can deal with physical problems and "just live with it", but when the memory starts to go at 47, it's a problem! Just had a CAT scan of abdomen that showed retroaortic left renal vein. Does anyone know if there's a connection between memory problems, weakness in the right eye and right side of face, stomach hardening, pain in veins on the inside of right leg, nerves in rectum zapping and past liver enlargement? Help?!?!?! I'm ready to scream! So many test and no answers!

New Member

Date Joined Jan 2016
Total Posts : 1
   Posted 1/16/2016 5:34 PM (GMT -6)   
Tiredofbeingsick2- I just read your post. Your symptoms are almost identical to mine. Did you ever find help or relief?

Veteran Member

Date Joined May 2005
Total Posts : 7724
   Posted 1/16/2016 7:59 PM (GMT -6)   

TiredOfBeingSick only posted the one time back in Feb of 2014 and hasn't been on since. It you're interesting in joining in, please create a new thread telling us about your history and what's going on -- maybe a current active member can help you out.

I'm going to lock this thread as it is from 2009!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde
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