Vascular Surgeon Update-Renal Vein And Other Stuff

[HopeSprings]

I posted last week that I saw a Vascular Surgeon and he agreed to look for Nutcracker Syndrome with ultrasound. I brought him a few articles, one of which described the procedure for performing the ultrasound and said it should be done laying, sitting, and standing. He agreed. So I go in today to have the test, layed down on the table and said to the tech, so this is going to be done in different positions, right? She was dumbfounded. He hadn't told her anything about this. Why was I not surprised? So she called him (he was at the hospital) and he confirmed. So we did the test in all those positions.

She then looked at the leg veins/valves - a BP compression type cuff squeezed my leg every so often and they look for "reflux" - blood flowing back down the leg I guess (pooling?). I met with the Dr. later and he said my leg veins are fine, the valves close appropriately. Now I'm confused - what do we have in there, veins, vessels, valves. What in us isn't working that's causing the pooling? Are we really pooling? That's number 1.

Number 2 - the renal ultrasound... guess what? That renal vein gets compressed when I sit and/or stand. He confirmed - it definitely gets compressed. BUT he doesn't think this is causing any problems. WHAT? Why did we just do an ultrasound looking for compression if compression doesn't mean anything? He said he thinks Nutcracker Syndrome is overdiagnosed. WHAT? I could barely find a Dr. who has ever heard of it - I don't think too many are passing out this diagnosis. He asked how this would account for my symptoms anyway and I explained that from what I've read it can sort of mimic POTS or cause orthostatic intolerance. He said why haven't I encountered it 40 years of medical practice? I said because people with POTS (or my symptoms) aren't coming to see you. Why is this person testing me for something he doesn't believe in and sending me for tests he does not have the ability to interpret?

He seemed so interested and wanting to uncover what was wrong during our first visit, but midway through the second visit, I saw the light go out. I can always tell - their face just changes and you know you're about to get the boot. So he believes something is wrong, but was honest and told me he couldn't help and referred me to some other vascular guy in NYC who would be "fascinated" by this whole "syndrome." I'm not sure which syndrome he was referring to - Nutcracker or POTS.

Sorry this turned into a bit of a rant. The reason for my post.... what are your thoughts about the leg vein test. Maybe this one doesn't look at our specific issue? Can someone explain? And what do you think about the renal vein compression thing - could this be something to pursue?

[Katybug]

Hi Naomi,

No feedback about the leg veins as I haven't really looked into the testing much. But, I wanted to say that I think even though this doc turned out to be a weeny, I think you had a really good find with the renal vein issue and you should take the ultrasound films and go see someone who is interested. It really could be a major player in why you haven't found anything that makes you feel at all better. Take your test and run! Don't get discouraged (I know that's easier said than done.)

Thinking good thoughts for you,

Katie

[sue1234]

Maybe our veins are just "open" in general when we pool. I have no clue. As far as the Nutcracker, at least it showed it sitting and standing. That's half the battle. Now to find a doctor that "gets it"! I had called up a vein specialist in my area last year and asked if he would see me to investigate for Nutcracker(all via the receptionist). She got back with me that he said he doesn't do that. I mean, here they are supposed to be a "vein specialist", and they claim they don't look into renal vein issues.

[roxie]

Dr's have to be smart but they are so idiotic!

I say try to find a good interventional radiologist or nephrologist to look at it. It says nutcracker syndrome can cause POTS on the dinet page

[azmusiclover]

Can't help on the specific question, but I can sympathize with the doctor frustration. I have had that happen with my daughter. They get threatened because they are the physician and you are the patient and when you know more than they do, it intimidates them. It's annoying. All you are trying to do is be an advocate for yourself/your child and when it's a rare, confusing thing, you HAVE to educate yourself and sometimes them. That's why they call it the "practice" of medicine.

I really hope that you can find someone who is willing to help you, and interpret the readings. Ridiculous he was willing to do the scans that way and then blow you off.

[issie]

I asked a nephrologist at Mayo about it and he was willing to do the scan - but, said if it was found, he wasn't willing to do surgery for it. He said there would be a good chance of losing a kidney with trying to correct the problem. He said, if we did find it - I would have to go to someone else - cause he wouldn't address it.

Issie

[misstraci]

Naomi, i'm so sorry! I hate the attitude and disconcern that most doctors seem to have and express towards us. I think more than anything, it is because they are unknowledagable about certain topics and so to make themselves not feel so uneducated on the subject, they pass you off to someone else, another specialist or something OR act like it's no big deal.

I told you that I do have the nutcracker syndrome as well, diagnosed by abdomen CT scan and asked my PCP about it last week, he had the nurse call me back saying, no, it had nothing to do with the symptoms I have been experiencing (POTS symptoms). But this is coming from the guy who told me that all POTS was was that when you bend over and back up too quickly, you get dizzy, what what what???? I think most of us know a lot more than most doctors out there or so it seems when it comes to dysautonomia.

We should all gather and take a field trip to mayo or vanderbilt or something and have a big group testing, research, etc etc. We can be their guinea pigs as long as they help figure this all out!!!!

[sue1234]

Misstraci, oh yea! That sounds like a plan!!

It seems like the researchers are kind of ignoring things. Like the new person that went to Vandy this week and mentioned the problems with hypoglycemia. The POTS specialist had nothing to say about it and referred her out to an endo. You'd think they would think, wow, alot of POTS people have reactive hypoglycemia--I wonder why?

[HopeSprings]

Thanks for the input guys. As Katie suggested I'm going to take this ultrasound to someone who might know something. The Dr. he's referring me to might be someone good to see, but I'm going to e-mail him first with the whole story beforehand. Going into the city is a major ordeal for me - it has to be worth it. Issie - this Dr. said something similar to what you were told - he said he wouldn't put a stent into a perfectly beautiful looking vein. And I agree ...obviously there would be have to be really good evidence before doing something like that.

[Dizzysillyak]

A POTS sit in / supine in for us. Sounds like a great idea. And we don't leave until they answer our questions.

Sorry to hear you didn't get answers even after testing positive for Nutcracker syndrome. I'd have thought

that would've opened some doors for you.

I don't understand why doctors are hesitant about doing

the surgery since they perform other surgeries with similiar risks. Is Nutcracker syndrome

taken seriously ?

[HopeSprings]

A POTS sit in / supine in for us. Sounds like a great idea.

ha ha ha!... funny!

[bellgirl]

Naomi...I've always thought that my POTS could be kidney related, because my dad had a Medullary kidney. That's why I am on Losartan. I would get an IVP, if you think that there is something going on with your kidney, not that they could really do anything, anyway...how frustrating...so sorry I like the POTS "sit in" idea Dizzy

[issie]

Even though we know I have kidney involvement - I didn't do the test - because if there is very little that can be done - what's the point. I also have low renin and aldosterone levels - that can come from the kidney pathways. He said normally he would do heavy diuretics and beta blockers for this. Guess what, now I am on diuretics. It sounds like it should be so wrong for POTS ----but, I'm actually tolerating it pretty well. I can't do the beta's because of mast cell issues. But, just the diuretic alone is lowering my high bp's and tachy and my edema is getting better. Soooooo, time will tell. The med. is not without some possible horrible consequences though. Scary to read the possible side effects. But, I'll just pay close attention to my body and hopefully - none of those awful things will happen.

Issie

[HopeSprings]

Kim - what's an IVP? Forgot to say I had blood in my urine for years (not sure if I still do because it hasn't been tested recently), but they couldn't find the source of it and this is also one of the symptoms of nutcracker.

Issie - is the medication your talking about - the Diamox? I remember you said it felt like stuff was draining out of your head. Did you have pressure in your head before that this medication is helping? I have constant pressure in my head - it's terrible.

[issie]

Yeah, I'm trying the Diamox. So far, so good. Too soon to say whether or not the benefits out-weigh the side effects. But, thinking that it is helping. I do have pressure in my head and it is helping it to drain. It also increase blood flow to the head and that increases oxygen. It increases resperation and that's a good thing. It has a lot of good benefits . . . time will tell what will happen. Like I said - still to soon to say for sure.

Issie

[bellgirl]

An IVP is an intravenous pyelogram, which puts dye in your veins to specifically visualize your kidneys, Naomi Sorry, I shouldn't have assumed you would know what that was... I also have head pressure that includes strange eye drainage when I am symptomatic, too; I've always wondered whether it could be CSF.

Oh Issie, btw, I am also on a diuretic. I had trouble with ankle swelling especially in the summer time, even pitted edema at one time, so your not the only one. Normally, that would be like poison to a POTS patient, but remember that we both have hypertension with this, too, which is different than most, too!!