POTS and vascular compression syndromes

kangaSue

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There was some interesting observations made in this paper looking into a connection between POTS and varoius issues of vascular compression including Thoracic Outlet Syndrome, Popliteal vein compression syndrome, Pelvic congestion syndrome and renal Nutcracker syndrome.

The author here suggests the key to the pathogenesis of POTS lies in the measurement of the inflammatory
responses when the popliteals, subclavian or pelvic veins are compressed.

https://mermaidcentralresearch.com....ion-Syndromes-in-POTS-A-Preliminary-Study.pdf
 

ScottTriGuy

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Thanks so much for posting this @kangaSue I have TOS and this article is really speaking to my symptoms.


I thought this quote about MS was very interesting...

"...studied 85 Multiple Sclerosis patients demonstrating all had undiagnosed thoracic outlet syndrome, unilateral or bilateral, and usually predominantly of a venous type."

Because it reminded me of this controversy:

Dr. Paolo Zamboni — the Italian vascular surgeon who first suggested, in 2009, that narrowed veins in the head and neck, a condition he dubbed chronic cerebrospinal venous insufficiency (CCSVI), could be a cause of MS and that widening them could treat the disease.


And I wonder if it also fits with what @jeff_w experienced / discovered with CCI.

So maybe to my simple mind:

viral / bacterial infection --> laxing of connective tissue --> CCI, TOS, POTS / OI, MS and more
 
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sb4

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@kangaSue Interesting about the Thoracic Outlet Syndrome. I have had slight problems with the right shoulder area for a long while. Interestingly when I hold good posture, my right shoulder/should blade area starts to get painful and it feels like the blood flow is somewhat cut off to my right arm.

Could be from using PC and forward head posture.
 

kangaSue

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@ScottTriGuy I've read a fair bit about Dr Zamboni and the controversy involved.

On the subject of MS, I saw mention of a presentation to a CCSVI International Society of Neurovascular Diseases Annual Scientific Meeting by a Dr Sal Sclafani, a Vascular surgeon with particualr interest in Nutcracker Syndrome (left renal vein compression between the aorta and superior mesentery artery). It was his experience of treating 100 patients with MS that 60% of them have a greater than 50% stenosis of the renal vein.

This degree of narrowing of the left renal vein would be treated as a "normal variant" of diameter by the vast majority of other Vascular Surgeons but it's interesting to note that the same degree of narrowing is a major problem for a lot of women with Pelvic Congestion Syndrome after the left ovarian vein (LOV) has been embolized because of PCS.

Many doctors are not realising they are causing significantly increased venous pressures in cutting off the return route of blood from the left kidney by embolizing the LOV, and that's a significant volume of blood flow involved. I know from having Nutcracker Syndrome (NCS) myself that about 20% of those with NCS also have POTS (and about 80% with NCS have PCS) and many find the POTS symptoms to resolve in fixing the renal vein blood flow issue.

Dr Sclafani discussed the effectiveness of stenting the left renal vein to improve spinal cord blood flow. He defines CCSVI as a clinical syndrome caused by inhibition of cerebrospinal venous hemodynamics (the theory is that veins bringing blood from the brain and spine back to the heart become too narrow, causing some of that blood to leak into the brain tissue). Sclafani stated that there are several causes of spinal venous congestion and numerous radial veins, which are valveless, until the vertebral veins.

Sclafani believes that many neurological symptoms are associated with Nutcracker Syndrome (which can increase venous pressures in the spinal tract as well as the abdomen and pelvis) and there is this strong association with Multiple Sclerosis.
 

ScottTriGuy

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A comment by Jonathan Edwards on that other site:

I don't this deserves to be called an article. It is pseudoscience dressed up in the form of a scientific article by a private clinic. Anybody can make stuff like this up. It is full of contradictions. It is stuff like this that makes me think the whole POTS/EDS/MCAS story is junk. There are just people in university hospital clinics who are better at dressing up the pseudoscience and getting it published.


 

Gingergrrl

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Thanks so much for posting this @kangaSue I have TOS and this article is really speaking to my symptoms.
Can you remind me, Scott, did you ever get treatment for your TOS and did it help? There are times I wonder if I have TOS (on the right side of my body) but have never been tested for it.

Interestingly when I hold good posture, my right shoulder/should blade area starts to get painful and it feels like the blood flow is somewhat cut off to my right arm.
I have a very similar issue with the right side of my neck, right shoulder, and right arm. The neck pain shoots down my arm and is very painful and at times my right arm feels numb and tingling. I am not sure how much posture relates to the issue for me (b/c I had neck injury in 2006 and arm injury in 2010) but texting, and especially looking down at my phone while texting, definitely makes it worse.

It is stuff like this that makes me think the whole POTS/EDS/MCAS story is junk.
For anyone who has suffered from any or all of the three illnesses above (POTS, EDS, and/or MCAS), they know that their diagnoses and suffering are very real, as do their doctors, and are not "junk". There will always be doctors who do not believe them and while this is unfortunate, it is not worth my energy trying to convince those doctors vs. working with the ones who are knowledgeable and finding the proper treatments.
 

ScottTriGuy

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Can you remind me, Scott, did you ever get treatment for your TOS and did it help?
No, and the doc who diagnosed TOS was not interested (surprise) when I tried to engage him the OI I would sometimes experience when using my arms.

He would be another example of a closed mind.

ETA: nope, wasn't offered any treatment
 

Gingergrrl

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No, and the doc who diagnosed TOS was not interested (surprise) when I tried to engage him the OI I would sometimes experience when using my arms. He would be another example of a closed mind. ETA: nope, wasn't offered any treatment
I am sorry to hear all of this although I can't say that I am surprised :(:mad::aghhh:
 

ScottTriGuy

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