Nonpelvic comorbid symptoms of 45 patients with pain of pelvic venous origin, before and after treatment (Smith, 2024)

[kushami]

This study looked at how non-pelvic symptoms changed in 45 women after they underwent iliac vein stenting, embolisation, or both.

Of note:

Overlapping individual symptoms characteristic of fibromyalgia and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) were present in 64% to 82% of patients and all improved by 49% to 63% after treatment.

Abstract only:
https://journals.sagepub.com/doi/abs/10.1177/02683555241273109

 

[Donsboig]

I'm part of a Facebook group looking at jugular vein compression in the neck. In some instances decompressing those veins can improve fatigue, headaches, dizziness and all sorts of other symptoms.

I've wondered for a while (and followed some of the literature) if this can also be the case with other venous compressions. There is also some emerging research linking pots with venous compression. But it's all very early research unfortunately

 

[Donsboig]

@kushami we seem to be bumping into each other on a few threads, we must have overlapping areas of interest!

 

[kushami]

@Donsboig , could well be!

I must admit that I don’t have venous compression, but I like to wander through recent studies when I can’t sleep, and this one struck me as being interesting.

(My problem is low blood flow to the brain, caused by abnormal vasoconstriction, probably from autoantibodies interfering with the receptors there. So mine is chemical rather than mechanical. But I can still sympathise with low blood flow being very unpleasant.)

Do people with jugular vein compression get positional changes in their symptoms, either from moving the neck, or from lying/sitting/standing?

 

[Donsboig]

Yes definitely some people have symptoms increase when turning head to the side, or looking up or down. These movements can cause the veins to be more pinched by bone or muscles.

I have a pet theory that jugular vein compression may cause pots (one possible explanation: the body senses the constriction and pumps out loads of vasodilation signals, causing poor venous return to the heart from legs, abdomen etc. and therefore pots) but there's no evidence for this currently! That's why I'm so interested by the very early research showing possible links between iliac and abdominal venous compression and pots.

 

[kangaSue]

I had been meaning to do a post about this recently too as another paper by some of these same authors found a high prevalence of significant left common iliac vein (LCIV) compression in their female POTS patients cohort and I know anecdotally from being in a number of Facebook groups for the various abdominal vascular compression syndromes that POTS (which is often secondary to these compressions) frequently resolves too from treating the various compression syndromes.
https://journals.sagepub.com/doi/10.1177/0268355520947610

The American Vein and Lymphatic Society International Working Group on Pelvic Venous Didorders at least now recognises the related symptoms that can go with pelvic venous flow abnormalies.
https://www.sciencedirect.com/science/article/pii/S2213333X21000718

 

[Oliver3]

I wish more research was done on this

I think it's a downstream problem of connective tissue dysfunction but I'm pretty sure it would give symptomatic relief for many of us if this could be sorted in the neck or anywhere else in the body ( nutcracker etc)

 

[kangaSue]

I wish more research was done on this

I think it's a downstream problem of connective tissue dysfunction but I'm pretty sure it would give symptomatic relief for many of us if this could be sorted in the neck or anywhere else in the body ( nutcracker etc)

Those having the connective tissue disorder Ehlers Danlos Syndrome are certainly at significantly higher risk for having any of the abdominal vascular compression syndromes (AVCS), or in fact, are more susceptible to having a combination of these conditions,

However, people having EDS tend to account for about a third of patients for any compression syndrome - a high patient cohort for sure but not a majority of otherwise affected people. I think if statistics were taken for those patients with multiple AVCS's though, EDS patients would be the majority cohort from my observations and POTS is high among them too.

https://academic.oup.com/ehjcr/article/6/4/ytac161/6565741

 

[Oliver3]

I agree. I'm also pretty sure that subclinical eds is everywhere amongst the m.e. fibro community. It can be quite hard to identify as the disorders in eds are not easily quantified

 

[kushami]

Yes definitely some people have symptoms increase when turning head to the side, or looking up or down. These movements can cause the veins to be more pinched by bone or muscles.

I have a pet theory that jugular vein compression may cause pots (one possible explanation: the body senses the constriction and pumps out loads of vasodilation signals, causing poor venous return to the heart from legs, abdomen etc. and therefore pots) but there's no evidence for this currently! That's why I'm so interested by the very early research showing possible links between iliac and abdominal venous compression and pots.

That reminds me of a post I saw on another forum from a young woman in the UK who fainted every time she lifted her head / looked up. She had been trying to get help but was eventually just told to “live with it”, i.e. try to never look up again. I hope she has found her way to the Facebook group you mentioned.

Is Doppler ultrasound any help in these conditions, e.g. getting the patient to move their neck in various ways and seeing whether the blood flow changes? I know it can be done on the arteries in the neck and the head. I suppose you would need to measure them simultaneously to try to pinpoint where the compression is taking place.

Or perhaps the new Lumia gadget that measures cerebral blood flow in an artery behind the left ear will reveal something. It is only a “health wearable” at the moment, taking measurements at intervals and giving a trend to display on a smartphone, but the inventors have plans to develop a medical version. That is still some years off but the company has formed good links with researchers and it all looks promising.