Pulmonary Embolism Support Group

By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.

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cjmenjou 10/26/2009

If there's one thing this PE experience has taught me (and it's taught a few....) is that docs don't know much about it.. how they form, why they form, how to treat them, etc. Yeah, tehy have theories and ideas, but the advice and info is all over the map

Just read this link, new theoy that most PEs may not come from DVTs. This interests me since they could find no evidence of DVTs with me, despite upper and lower body ultrasounds. My hematologist said that's not unusual given the 5 weeks between first onset of PE symptoms (never had DVT symptoms) and diagnosis, but this suggests that DVTs leave traces of their presence

http://www.modernmedicine.com/modernmedicine/Modern+Medicine+Now/Pulmonary-Embolism-Found-to-Be-Often-Unrelated-to-/ArticleNewsFeed/Article/detail/635978?contextCategoryId=40137

deleted_user 10/27/2009

No signs of DVT found in my leg when I was diagnosed with PE. However, my knee was in a brace from a recent dislocation and I was immobile for weeks, with symptoms of DVT a couple weeks before the PE.

Perhaps not all DVTs stay behind when emboli break off?

deleted_user 10/27/2009

They found no traces of DVTs in my legs, but my knee did swell up several days before I was diagnosed with a PE. The doctors did say a clot could have originated from the pelvic region, which they didn't ultrasound.

I wonder if you're right, bishop9 - maybe some break clean and leave no trace?

It's scary to think that they all originate in the lungs and that blood thinners would therefore not help. I sure hope that study is wrong!

deleted_user 10/27/2009

It is worth noting that they only studied trauma patients.

Coumadin and lovenox clearly work. When you look at the clinical evidence, people treated with anticoagulation have a very low risk of having another PE, while people not on treatment have a pretty high risk.

I think they are mainly evaluating the effectiveness of using a vena cava filter for trauma or orthopedic patients.

cjmenjou 10/27/2009

As a followup, this wasn't posted to question the efficacy of anticoagulants, just interesting to me that, in 2009, with all our modern medicine, they still know very little about clotting, relatively. This is just an example. In one of the stories I read, a doctor stated to the effect that "if this is true, it might turn out that we have been preaching the wrong dogma all along."

As for in situ formation of PEs, I don't see why the anticoagulants wouldn't prevent clot formation there as with any other location

Ferr 10/28/2009

I am one of the lucky ones to have repeated undiagnosed PE's. I have been ultra sounded, MRI'd, x-rayed, cat scanned, dog scanned (made that one up) and pet scanned (I feel like I've been to a vet) many times to find a cause and guess what? They still haven't a clue. One doctor even suggested possible a-fib of the left ventricle of my heart which I later learned would result from a PE not cause the silly things. Anyway, I am on Coumadin for life and still no closer to finding out why I get them.

RetiredNavy02 10/29/2009

Since Harvard Medical School is listed in this article I went to a person at Harvard who ran the International Cooperative Pulmonary Embolism Registry (I.C.O.P.E.R) for many years. He is one of the leading blood clot specialist in the U.S. and on the front line of all major studies regarding blood clots and clotting disorders (also the head of NATF, DVT Coalition and Venous Disease Coalition). His response regarding the study was "there are flaws in this recent study in that many of the DVTs probably embolized completely to the lungs". What is meant but that is the DVT itself had dislodged and traveled to the lung. In cases like this there would be no evidence of a pre-existing DVT unless signs of valve damage are identified or Chronic Venous Insufficiency is diagnosed.

Ferr 10/29/2009

Tom, as always thanks for getting the whole skinny on things for us. your the best.
Hugs
Ferr

RetiredNavy02 10/29/2009

Ferr,

Thanks! Are you feeling any better yet? So far I've been able to stay clear of any crud (virus' and flu's)going round. Having two young kids in school, the odds are against me being able to remain crud-free

LauraLu 10/29/2009

Interesting - I was under the impression that whole DVTs rarely moved, but that pieces break off and cause PE. Good to know and thanks for the info.

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