Ok, Something Really Interesting!

[sue1234]

Thanks to POTSdad's post the other day on "Pelvic Congestion" on 10/6(?), I have been reading about it. It basically says that Dr. Peter Rowe, the pediatric POTS specialist, has found a few cases of pelvic congestion syndrome in his patients. I have been looking that up and finding all the info I can on it. This is something VERY interesting that I found related to it:

Some people with pelvic congestion syndrome actually have been found to have it happening due to Nutcracker Syndrome. What this is is the left renal vein that drains the left kidney gets "trapped" and pinched off between the back and the aorta(if I understand this correctly). When this happens, blood drainage "reroutes", and ends up forcing more blood to be "backed up" into the pelvic area and sometimes even lower into the legs.

If that wasn't interesting enought, read this link:

http://www.bhj.org/journal/2008_5001_jan/download/retro-aortic-left-renal-vein-hypertension.pdf

First, it talks about how it produces labile hypertension, which I believe you could say alot of us POTSy people have. The patient presented with "chest discomfort and palpitations", which alot of us have. Secondly, in the discussion area, it talks about how when the blood flow is "backed up" into the left kidney, the renin output FROM THAT KIDNEY is increased. Then the right kidney will compensate and reduce its output of renin. These extremes will cancel each other out and show a normal renin on labwork. And we all know how aldosterone is influenced by the renin system, so maybe there's a clue there as to why some of us have low aldosterone.

This is sooo interesting! Even though I look into ALL possibilities that might point to my POTS problem, this one really hits home with me. I am the one that has to sit in a slouched, semi-reclining position. I have told doctors that I can't sit straight up, as it seems to affect me very much like I am standing up--my blood pressure rises, heart races, and then comes the lightheadedness.

In the article, it said that this patient was told to avoid positions that would exacerbate the condition, such as hyperextending the spine. Well, in my case, I feel better sitting in a "rounded forward"(AKA, slouching), and don't even do well lying flat. I also have to lean somewhat to the right when sitting.

I can't believe this huge "positional" issue with me may be caused by this or something VERY similar. I found out at my new urologist appt. that I went to to find out why I have blue urine( ) that I have microscopic blood. I mentioned that I have that everytime in the last 10 years that any doctor has randomly checked my urine. The doctor is going to investigate. I will bring a copy of this article to my next appt. and see if we can get the ball rolling on checking for this. Even if I don't have this, I now know there are doctors called Interventional Radiologists who are basically your doctors that read all of our CTs, etc., but I could actually see one and explain how sitting feels like I am cutting off my circulation. There is hope!!!

[lieze]

I feel the positional change too and sometimes when I bend over it actually feels like it's cutting off my blood supply I think I've even gotten a head rush as I stand up from it etc etc.

I also think it's why driving is difficult for me because of the position it puts you in.

It just seems more noticable as I get older. When this stuff first started 2 yrs ago right away I thought this is how I felt when pregnant. Obviously the body changes that happened made me also feel these things.

Bending down and picking things up is hard for me both with having to dip my head and just the bending over so yeah I can relate very much to the positional factor.

I guess I've just always wondered if the problem relates to my long torso and the fact that it almost seems as if I'm pinching off my aorta as I bend.

[lieze]

I feel the positional change too and sometimes when I bend over it actually feels like it's cutting off my blood supply I think I've even gotten a head rush as I stand up from it etc etc.

I also think it's why driving is difficult for me because of the position it puts you in.

It just seems more noticable as I get older. When this stuff first started 2 yrs ago right away I thought this is how I felt when pregnant. Obviously the body changes that happened made me also feel these things.

Bending down and picking things up is hard for me both with having to dip my head and just the bending over so yeah I can relate very much to the positional factor.

I guess I've just always wondered if the problem relates to my long torso and the fact that it almost seems as if I'm pinching off my aorta as I bend.

I'm going to correct this because I'm not sure it's the aorta that's being pinched off it feels more like the inferior vena cava if I have that right. The large vessels that run through the torso that carry blood to the lower half of the body and back up. I feel like all of this gets occluded as I change position.

[sue1234]

Lieze, those are the exact things I have told my doctors in the last few years. I have said when I am in certain positions, I feel like my "great vessels"(aorta and/or vena cava in abdomen) are being choked off. Mainly I think this because of the symptoms they produce--increased b/p, pressure in my chest/head, tachycardia and the lightheadedness. I just know that my circulation FEELS cut off, and then the brain panics from lack of adequate circulation, and then the adrenaline kicks in, and so on and so on.

[sue1234]

I just want to add what I read in another medical journal a few minutes ago:

"This has been termed the posterior

nutcracker phenomenon. The left renal vein hypertension

may cause some clinical symptoms, such as

haematuria, proteinuria, varicocele, flank pain, autonomic

dysfunction and chronic fatigue [3?5]."

Okay, this article mentions "autonomic dysfunction" as a clinical symptom. Curiouser and curiouser!!

[lieze]

I also have a tendency to lean to the right and you know what else. This is funny I won't mind if you laugh. But I had a free psychic reading from someone online ( a fluke I don't do things like that someone I was talking to offered and I was like what the heck-curious) they told me one of my legs was longer than the other well I never noticed it but guess what I did notice.

The imprint on the slipper of my left foot is not flat it's curved it slants to the inside if I'm remembering correctly opposed to the imprint in the other so I wonder if this leg is shorter and the leg isn't long enough to make a flat imprint and that is why it appears as if I am partially walking on the side of my foot and yeah it would lean to the right too.

[lieze]

I feel like I have the chronic fatigue for sure.

[sue1234]

I won't laugh, I promise!! I totally understand the depths we will go to to find a cause for something that seems to happen out of the blue.

I actually do have my right leg shorter than my left by about 1/2 inch, due to breaking the growth plate at my ankle before I was through growing. It, in turn, has caused me to have a slight scoliosis. So, now I wonder if this could be the link with the EDSers--having curvatures. Even though I don't have EDS, I do have exxagerations in body angles. All of this could throw off the position of internal organs.

One other article did say it is seen more in tall, thin people. I, by the way, am short and 20 lbs. overweight.

I am editing this, as I found some earlier DINET discussion on this:

http://forums.dinet.org/index.php?showtopic=3003

This was brought up in 2005!! Why have some research institutions not started checking this in people with POTS? It could start out with a simple ultrasound, or just do a CT scan.

Well, I know I am going to ask for sure and get the ball rolling on this one. I have already found a group of Interventional Radiologists at a large teaching facility in a medical center three hours away. I just hope that I can get the right tests, and not have problems like Michiganjan in the previous link.

[juliegee]

Wow, your positional stuff sounds challenging for sure, Sue . Sorry you are so dramatically affected. How cool that you may be on to a cause.

Dr. Rowe is Mack's ped and I've read about the pelvic congestion thing- even mentioned it here- repeatedly over the years without really understanding exactly WHAT it is. Your post helps clear that up for me.

I was born with one leg longer than the other and had to wear a weird splint/cast for 6 months or a year (?) to straighten things out. It spread my legs apart, like almost in a Chinese split, and stopped at my knees, that dangled down normally. As an infant, I learned to walk with it on- can you imagine? Wonder if there are others here with that "one leg longer" curiosity???

Keep us posted as to what you find out as you chat with your docs.

Julie

[nunntrio]

Please keep us posted on this. I have battled PCS and suspect it is at least partially behind my POTS. This Nutcrack condition is listed as one of the causes of POTS on DINET and I have actually begun to wonder if this my somehow apply to me. Please let keep us posted about what you find. Thank you for posting

[nmorgen]

Very interesting. I also have problems with my left kidney. I have severe scoliosis and my spine curves to the left side at the bottom. I've often wondered if my spine puts too much pressure on my kidneys, because it can be very painful. Now, I'm wondering if it could also be affecting my blood flow to my kidneys.

[sue1234]

Julie, I ALSO had to wear a brace as an infant!! I was born with congenital hip dysplasia. All that it did was make my legs hard to open for my mom to change my diaper. So, I wore braces for many months that sounds alot like what you had. Afterwards all is fine, except I never could do the splits!!

I definitely will let people know if this is what I have. I now have to first wait for my repeat uro appt. on the 19th. Waiting, all the time....

[MomtoGiuliana]

Interesting. I don't think this explanation works for me b/c POTS came on very suddenly with pregnancy and resolved eventually (for the most part)--however I had hip dysplasia and wore a cast as an infant and my walking was delayed due to that. Hip dysplasia is also seen in EDS which is another cause of POTS. I do not believe I have EDS either tho as I don't have other symptoms.

[issie]

Interesting subject. I wonder????? I had to wear a splint too. I looked like a ballerina. It was to turn my feet out and rotate my hip around, also had club feet. Have lots of problems with hips and legs also do have EDS. I know my veins are very lax. I also had leg vein surgery when I was only 26. I've had so many ab surgeries with lots of suspensions on internal things. Don't really know if the kidneys ever where checked but nearly everything else has been suspended --- if it wasn't taken out and/or rearranged.

[lieze]

Oh I don't know if this counts but all the little spider veins in my legs from an early age. Like I was only in my 20's and I started getting them. I remember in my 30's not wearing shorts for an entire summer because I was so self conscious. Now I don't know if I have any true varicosities but yeah I have the veins that are noticeable especially I think in the right leg.

And they would be sore and achey if I worked a lot and driving with that right foot would often set me off and sometimes I wondered if it wasn't that pressure of holding the accelerator down that made that right leg more prone than the left no way to know just know that aggravated it.

[lieze]

Also hemmorhoids and that may sound off track but they are varicosities of the veins in the rectum. I got those actually before child birth from lifting people in the nursing home.

And childbirth did make them worse for sure.

[skiberthoud]

Hi Sue1234 - thanks for the interesting subject. Sorry to digress from the discussion, but I noticed you mentioned a change in your urine color - just made "porphyria" come to mind...don't know if it fits but had to throw it out there

[POTSdad]

Thanks Sue1234 for highlighting the link with PCS and Nutcracker Syndrome. We will ask my daughter's interventional radiologist to also check for Nutcracker Syndrome.

[sue1234]

Tablet, porphyria is one of the things I'm sure my uro is thinking of. I have actually already done a rudimentary test on my urine for that last month! I put the urine outside all day to see if the sunlight would affect the color, but it didn't.

[HopeSprings]

I looked into this as well. I have had hematuria for several years now. Every time they check my urine there is either a little blood or a lot, but always blood. I went to a nephrologist and asked to be checked for Nutcracker Syndrome. He sent me for a CT scan of the area and the radiologist did report that the left renal vein was being compressed (or was it narrowed?) but only slightly, so they felt it wasn't enough to cause any problems. The nephrologist was shocked that the results actually came back showing this because it was kind of a shot in the dark. He referred me to a vascular surgeon to follow up with. The vascular surgeon pretty much blew me off and dismissed the idea. The thing is I FEEL it in this area -- there is a tremendous amount of pressure in left upper quadrant and left lower flank area, especailly when I get up in the morning. When I get up and all my POTS nonsense starts -- I am compelled to squeeze or put pressure on that area. I will just take my hand and squeeze there and it helps the sensation in my chest. For me this was another dead end, but I say go down the list of all possible causes and investigate them one by one.

[ana_22]

how can you be tested for this?

is an ultrasound of the renal artery sufficient? just wondering as i have had one of these done already

thanks!

[sue1234]

Naomi, you need to pursue this with someone else!! If your testing showed that you actually had compression of the left renal vein, then you HAVE Nutcracker Syndrome, from everything I've read.

Ana22, I have read that ultrasound of the left renal vein can be used, but the better way to see is CT scan/MRI, and the best is a venogram.

[HopeSprings]

Sue:

The radiologist said it wasn't enough to qualify as Nutcracker Syndrome and the vascular Dr. thought nothing of it either. Do you really think I should pursue this further?

Naomi, you need to pursue this with someone else!! If your testing showed that you actually had compression of the left renal vein, then you HAVE Nutcracker Syndrome, from everything I've read.

Ana22, I have read that ultrasound of the left renal vein can be used, but the better way to see is CT scan/MRI, and the best is a venogram.

[nunntrio]

Sue:

The radiologist said it wasn't enough to qualify as Nutcracker Syndrome and the vascular Dr. thought nothing of it either. Do you really think I should pursue this further?

Naomi, you need to pursue this with someone else!! If your testing showed that you actually had compression of the left renal vein, then you HAVE Nutcracker Syndrome, from everything I've read.

Ana22, I have read that ultrasound of the left renal vein can be used, but the better way to see is CT scan/MRI, and the best is a venogram.

Were the tests you had done for this done lying down or standing up. Most CT's and MRI's are done lying down in which case the blockage may not show up as well. The internentional Radioligist I went to said these test can not be relied upon for PCS for this reason. I think it is very hard if not impossible to find a vertical MRI. I guess that is why they use Venograms. Anyway just an idea.