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by krooj 832 days ago
I'll echo this - I have had two left leg DVTs, spaced about 7 years apart, and after the second event, really started diving into medical publications - surgical journals, medical textbooks, clinical trials - as a means to better understand the condition, it's pathology, etc. I ultimately submitted to testing and discovered a congenital stenosis of the left iliac vein with heavy retroperitoneal collateralization that necessitated a stent to keep that iliac vein open.

I also had a quick look into the social media (primarily reddit) aspect of these vascular conditions, and it's a pile of dogshit. Most of these patient communities bill themselves as "support groups", but there's never any real discussion on meaningful research, drug, or device advancements. They places serve primarily as "pity pits" for chronic moaners and scammers selling alternative medicine.
1 comments
gcanyon 832 days ago
This is interesting -- I have Factor V Leiden (heterozygous) and have had one DVT. It never would have occurred to me to seek out a support group.
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krooj 832 days ago
I also have the same mutation, as does my wife. From what I've been told by various hematologists, vascular surgeons, and interventional radiologists, it's a very weak clotting disorder, but you do have to keep an eye on certain environmental factors: smoking, hydration, movement, and trauma/surgery. To put it another way, FVL is fairly benign until you're already way into Virchow's danger done, and at that point it's gonna work against you. When it comes to VTE in the presence of ONLY FVL, I would shoot serious side-eye at a doc that chalked it up to the mutation - there's usually something else going on.
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gcanyon 831 days ago
Possibly true, but don't sleep on it -- I happened to be transitioning insurance when it happened, so I dragged it out for several days before ending up at the ER. They sent me home later that day, but with strict warnings about calling 911 immediately for any sign of stroke, heart attack or pulmonary embolism. Fortunately all I have to show for it is weakened vein flow in the affected leg.
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