Parallel universe: pelvic congestion syndrome

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Parallel universe: pelvic congestion syndrome

Postby bluesky63 » Fri Sep 23, 2011 1:00 pm

In a parallel universe, there is a condition known as Pelvic Congestion Syndrome that bears an eerie resemblance to CCSVI.

I just had a strange but interesting appointment in which I learned a thing or two about the pelvis.

History: I thought I had an ovarian cyst, or maybe I was just dying of chronic appendicitis, la la; I had one of those awful ultrasounds (half of you know what I mean); turns out my ovaries are fine, but my pelvic veins are not, so I was referred to interventional radiology for "pelvic congestion syndrome."

By the way, I think I love interventional radiologists. What makes these people so kind and smart and wonderful?

I have a new favorite image. The IR, a very sincere (and athletic) dark-haired young man, sat across from me in his medical-green scrubs. To illustrate concepts as he talked, he drew a freehand set of female veins on a clipboard propped against his own male pelvis. He was so very earnest, and I was trying so very hard not to laugh at the drama unfolding as he demonstrated "his" ovarian vein bulging and then being embolized against his six pack.

I do hope he's a much better doctor than artist.

But anyway. This is going to ring a bell or two.

The idea is that the pelvic veins are not normal and/or the valves are not normal – not just the gonadal veins, but sometimes the renal veins, the iliac vein, etc., causing pelvic pain, heavy legs, bladder symptoms, etc. (How would you distinguish some of this from so-called MS symptoms? The IR said you couldn't! There is a huge overlap between “MS” symptoms and “gynecological” symptoms and “vascular” symptoms here!)

Traditional imaging tests often miss the abnormalities and are somewhat operator dependent; in particular, a patient really needs to be upright in order for the tests to be accurate because pelvic vein reflux doesn't happen when you're lying down, which is the traditional position for MRIs, ultrasound, and pelvic exam, so it's usually missed (you also have to do the valsava maneuvers on the exam – they're looking for reflux in these veins); bottom line is that they prefer to go straight to venogram because CT, MRI, etc. are just not reliable diagnostic tools (I was boggled imagining doing something like this in an upright position – I would pass out, personally. Or maybe I'm not picturing it right?)

Many doctors thing the whole syndrome is nonexistent and that any relief of symptoms is the placebo effect; about 20-30 percent of people do not get relief of symptoms; but the people who do get relief swear that they get real relief and that it makes a difference.

Insurance companies do not want to pay for this

I was assured that the procedure, while somewhat invasive due to insering coils in the veins (!), is overwhelmingly safe; however, there are risks to be aware of, like the possibility of infection at the entry site, the possibility that the coils can migrate, etc. (like stents); the possibility that the procedure might do nothing at all.

Here are a few links I found:

A review by Anthem:

http://www.anthem.com/medicalpolicies/p ... 050265.htm

Another insurance statement:

http://blue.regence.com/trgmedpol/surgery/sur147.html

ovarian vein syndrome

http://en.wikipedia.org/wiki/Ovarian_vein_syndrome

pediatric chronic fatigue connection

http://www.ncbi.nlm.nih.gov/pubmed/1074 ... t=Abstract

more on nutcracker syndrome – POTS, GI stuff, etc

http://journals.lww.com/jpgn/Fulltext/2 ... nd.23.aspx

Detailed article from mayo clinic about nutcracker syndrome

http://www.mayoclinicproceedings.com/co ... 6/552.full

The pelvic congestion group have their own medical champion, a Dr Venbrux (I wonder if he has heard of CCSVI?):

http://www.cheneycardioinstitute.org/in ... enbrux-md/

They also talk highly of a Dr Jeffrey Gunzenhouser (again, do these pelvic congestion guys want to learn about CCSVI?):

http://www.stjosephs.org/getpage.php?na ... members-Au


Thoughts?
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Re: Parallel universe: pelvic congestion syndrome

Postby CD » Fri Sep 23, 2011 1:46 pm

Hi Bluesky,
I sent you a PM. :smile:
Where there is a will, there is a way. "HOPE"

CCSVI Procedure December 2010
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Re: Parallel universe: pelvic congestion syndrome

Postby Cece » Fri Sep 23, 2011 3:20 pm

By the way, I think I love interventional radiologists. What makes these people so kind and smart and wonderful?

I have a new favorite image. The IR, a very sincere (and athletic) dark-haired young man, sat across from me in his medical-green scrubs. To illustrate concepts as he talked, he drew a freehand set of female veins on a clipboard propped against his own male pelvis. He was so very earnest, and I was trying so very hard not to laugh at the drama unfolding as he demonstrated "his" ovarian vein bulging and then being embolized against his six pack.

I do hope he's a much better doctor than artist.

Lol!!

But you are in serious pain with this and your insurance won't cover it?
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Re: Parallel universe: pelvic congestion syndrome

Postby HappyPoet » Fri Sep 23, 2011 8:16 pm

Oh, Bluesky, you poor thing...

Last week, I sent this abstract to Cece to see if she thought it was worth posting... I hope it helps.

The more documentation a person can show an insurance company, the better off that person will be during pre-authorization and appeal:

http://www.sciencedirect.com/science/ar ... 7706007791

From the nutcracker-phenomenon of the left renal vein to the midline congestion syndrome as a cause of migraine, headache, back and abdominal pain and functional disorders of pelvic organs

Summary

This paper presents the hypothesis, that pain and functional disturbances of organs which lie on the midline of the body might be caused by a venous congestion of these organs. Cause of their congestion is the participation of these organs (vertebral column, skull, brain, spinal medullary, uterus, prostate, left ovary/testis, urinary bladder rectum, vagina, urethra) in the collateral circulation of the left renal vein. In many patients with complaints of the above mentioned organs the left renal vein is compressed inside the fork formed by the superior mesenteric artery and the aorta. This so called nutcracker phenomenon is incompletely understood today. It can lead to a marked reduction of left renal perfusion and forces the left renal blood to bypass the venous compression site via abundant collaterals. These collaterals are often not sufficient. Their walls become stretched and distorted – varices with inflamed walls are formed. These dilated veins are painful, interfere with the normal organ’s function and demand more space than usual. This way pain in the midline organs and functional derangement of the midline organs can occur. The term “midline congestion syndrome” seems appropriate to reflect the comprehensive nature of this frequent disorder. The rationale for this hypothesis is based on the novel PixelFlux-technique (http://www.chameleon-software.de) of renal tissue perfusion measurement. With this method a relevant decline of left renal cortical perfusion was measured in 16 affected patients before therapy (left/right ratio: 0.79). After a treatment with acetylsalicylic acid in doses from 15 to 200 mg/d within 14–200 days a complete relief of so far long lasting therapy-resistant midline organ symptoms was achieved. Simultaneously the left/right renal perfusion ratio increased significantly to 1.24 (p = 0.021). This improvement of left renal perfusion can be explained by a better drainage of collateral veins, diminution of their wall distension, thereby decline of their intramural inflammation, reduction of their mass effects (especially by the replaced spinal fluid inside the spinal canal and the skull), and altogether a reduction of pain and functional derangement in the affected midline organs. The proposed theory might influence the current understanding of such frequent and difficult to treat diseases as chronic back pain, headaches, frequent cystitis, enuresis, abdominal pain, flank pain and might spur new theories of arterial hypertension, placental insufficiency, prostate diseases and myelopathies.
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Re: Parallel universe: pelvic congestion syndrome

Postby HappyPoet » Fri Sep 23, 2011 8:40 pm

Cece, I found the above abstract while searching for info on Daflon -- perhaps its vasoconstriction effect might help some of these patients?

Bluesky, you might be interested in some of the recent threads on the supplement Daflon; the threads are still high on the first page.
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Re: Parallel universe: pelvic congestion syndrome

Postby Ruthless67 » Fri Sep 23, 2011 9:41 pm

So does anyone know any more about this treatment?

After a treatment with acetylsalicylic acid in doses from 15 to 200 mg/d within 14–200 days a complete relief of so far long lasting therapy-resistant midline organ symptoms was achieved.


Lora
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Re: Parallel universe: pelvic congestion syndrome

Postby Bethr » Fri Sep 23, 2011 11:57 pm

Hi Lora, acetylsalicylic acid is aspirin.
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Pelvic congestion syndrome - low risk treatment

Postby MarkW » Sun Sep 25, 2011 2:23 am

Hello Bluesky,
I am one of the minority of this site (MS is more common in females) who cannot empathise with you on the ultrasound procedure. My suggestion is just to treat vein values at this stage. Putting metal into the body carries a risk. I suggest that using balloons to treat values while not over-stretching them is a low risk approach (like CCSVI). The parallel to CCSVI is logical as veins have been ignored historically in medicine.
Sorry to hear your insurer will not pay.
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: Parallel universe: pelvic congestion syndrome

Postby CindyCB » Sun Sep 25, 2011 2:51 am

Interesting.

I very recently had a pelvic U/S because I experience a lot of pain in one of my ovaries. I was utterly convinced they would find something like a cyst... but all clear.

I wonder...
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.
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Re: Parallel universe: pelvic congestion syndrome

Postby dania » Sun Sep 25, 2011 5:45 am

Diagnosed with MS in 1988. Treated for CCSVI in 2010, twice, but restenosed. I also have CVI since 2 years. Venous disease does not stop at the neck.
Thanks for sharing that info. Very interesting.
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Re: Parallel universe: pelvic congestion syndrome

Postby DrCumming » Thu Sep 29, 2011 9:48 am

I think that pelvic venous congestion is real and treating it helps in the right patients. In fact, these are some of the most grateful patients I see - probably because so many providers tell them there is nothing wrong. Sorry to hear your insurance will not cover. Some do.
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Re: Parallel universe: pelvic congestion syndrome

Postby drsclafani » Fri Sep 30, 2011 5:55 am

bluesky63 wrote:In a parallel universe, there is a condition known as Pelvic Congestion Syndrome that bears an eerie resemblance to CCSVI.

I just had a strange but interesting appointment in which I learned a thing or two about the pelvis.

History: I thought I had an ovarian cyst, or maybe I was just dying of chronic appendicitis, la la; I had one of those awful ultrasounds (half of you know what I mean); turns out my ovaries are fine, but my pelvic veins are not, so I was referred to interventional radiology for "pelvic congestion syndrome."

By the way, I think I love interventional radiologists. What makes these people so kind and smart and wonderful?
]

bluesky:

love you guys too!

I have added a case germaine to pelvic congestion to my thread. A nurse i treated yesterday with pelvic congestion, azygous, right internal jugular, left internal jugular and left renal vein obstructions.

take a look

DrS
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
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Re: Pelvic congestion syndrome - low risk treatment

Postby Cece » Fri Sep 30, 2011 2:55 pm

MarkW wrote:Hello Bluesky,
I am one of the minority of this site (MS is more common in females) who cannot empathise with you on the ultrasound procedure. My suggestion is just to treat vein values at this stage. Putting metal into the body carries a risk. I suggest that using balloons to treat values while not over-stretching them is a low risk approach (like CCSVI). The parallel to CCSVI is logical as veins have been ignored historically in medicine.
Sorry to hear your insurer will not pay.
Kind regards,
MarkW

I think the coils are intended to clot and seal off the extra or tortuous veins. (coil embolization)
Pretty much the opposite of what's done for CCSVI blockages.
I notice that it is pelvic congestion SYNDROME, just as you've been trying to get us to say for CCSVI!

Bluesky, you haven't posted for a little while, please keep us updated with how you're doing! I remember you mentioning the friends on the forum being a bit like 'All My Children' where you have to tune in to see how everyone's doing, well this time you are the one taking a star turn! No cliffhangers please!
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Re: Parallel universe: pelvic congestion syndrome

Postby embolization » Wed Nov 21, 2012 6:12 pm

Hi i have joined the site because a lady on the site mentioned that she was diagnosed with pelvic venous congestion and I have had multipul embolization which have improved my condition but my treatment was stopped due to funding I was so close to being completely cured , if you get a diagnoses (venogram) and it shows venous reflux and damaged veins the you should consider treatment the only problem with the treatment is that embolization doesnt allways work ontil all venous paithways are treated and this could take multipul embolizations and cost alot and committ consultant to working with a multi disaplin team which may become more expensive good luck
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Re: Parallel universe: pelvic congestion syndrome

Postby 1eye » Thu Nov 22, 2012 6:38 pm

Insurance companies do not want to pay for this.
It's against their religion.

Along with the many similarities you have found, I think this one is a very strong connection. My diagnosis would be Insurance Company Insufficiency, with Pecuniary Congestion Syndrome.

But the diagnosis is investigational. As for that term, my spell-checker does not know it: the closest it comes is "investigatory". The language moves quickly, does it not?
"Try - Just A Little Bit Harder" - Janis Joplin
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