Parallel universe: pelvic congestion syndrome
Posted: 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?
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?