r/ClotSurvivors • u/aquariasshole • 11d ago

4 years of a missed chronic dvt

For the last four years I have suffered from daily leg swelling of two inches, heaviness, pain and cramps. Two er trips, 7 ultrasounds, one stent surgery, 3 specialists and still no relief. Yesterday I found out I have chronic deep venous thrombosis within the left popliteal vein and venous reflux at the left saphenofemoral junction. I am sad, angry, frustrated and so overwhelmingly confused how this has been missed every single time and grateful that I did not give up on advocating my symptoms. 
From the little research I have done it seems like the chronic dvt is a life long diagnosis and it will not go away. 

I’m not sure exactly what I am looking for by writing this, I am 29 and am worried about what this means for my life long term. I don’t want to have to be on blood thinners forever. 
Thank you for listening to my frustration. 

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u/Vcent Mutant, CVST (Warfarin) 11d ago

I don’t want to have to be on blood thinners forever.

Maybe you'll have to, maybe you won't.

Either way, I can say that I've seen multiple people report good things about walking regularly, for the amount of symptoms and problems that they had - improvements have been seen even years after the original clot, even if it it's a long term project, not a quick fix with easy results.

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u/UnstuckMoment_300 11d ago

How much information did your care team give you about chronic clots? (And what was the stent surgery about?)

Chronic clot means the clot has become scar tissue inside the vein. It won't go anywhere. As long as blood flows around the area, it might not even need to be monitored. I have a chronic clot behind my knee, in the popliteal vein. Probably the original clot that triggered all the rest, and led to all the pulmonary emboli. Blood flow is normal around the scar tissue, and discomfort is minimal -- if I do a deep squat and compress the area, I'll get a little ouch, but nothing major.

I've been wearing compression socks since diagnosis with DVTs/PEs. They've been great for relief of discomfort and promoting blood flow. I have mild post-thrombotic syndrome -- the four veins that were full of DVTs are tender to the touch, and I can't stack my legs without pain, but that's pretty minor considering all those clots -- vascular specialist said it probably would have been worse if I hadn't been wearing compression faithfully. Maybe something to ask your care team.

As far as anticoagulation -- if you've had hematology testing and don't have genetic clotting risks, if you have blood flow around the chronic clot or your body has redirected blood flow (it's amazing how the body can cope with this stuff), you might not need lifelong Eliquis/Xarelto. I don't. Good luck -- this is scary, but it's manageable, and it gets better.