Do they have your previous ultasound to compare to your new one? It would be interesting to see if the clot has shrunk considerably or changed at all. I mean, there might be one there but that doesn't necessarily mean that you can't come off warfarin.

My clots are from 2005 and 2009 and both are still in my right leg. My understanding is past six months or so, the clots are pretty solidified and have become part of the vein wall. Some people still see some dissolving after that point (I don't think I have), but either way the clot shouldn't be a danger anymore ... and I don't think (although I'm not sure) that new clots can "grow" using the old clot.

I really can't say whether having a chronic clot makes it more or less likely that you'll clot again. I mean, if it's part of the vein wall, I don't know why it would have any effect on whether you clot again or not. I mean, I'm not a great example, since I have chronic clots and I've clotted three times ... but I really am the exception to the norm. I think there are plenty of people out there who never have a repeat ultrasound (and many people don't), and come off warfarin and go on with life. They might still have residual clotting and might not. Since there aren't any repeat ultrasounds on many patients (probably at least half, if not more), I don't know that you could conclusively say that chronic clotting does or does not increase your likelihood of re-clotting.

Also, just cause you have a residual clot, that doesn't mean you won't get any better. Other that my right leg being larger than the other one, I don't have pain or numbness or discoloration ... even though I have the chronic clotting.

Definitely write down your questions for your doctor. And, if you're still concerned, ask to be referred to a specialist. Maybe talking to a couple different doctors will help you feel better about things.

My first and most extensive clot was when I was 19 (I'm 34 now). I was clotted ankle to groin and spent 2 weeks in ICU having two separate surgeries. Even after that, I had residual clotting, but I was able to come off Coumadin and go 7 years without another clot. It was then discovered that I have FVL, so that was the cause of mine. But still, I went 7 years while on a progesterone-only BCP and smoking, and I still didn't clot. It was until after I'd given birth that my next DVT came along.

The clotting was just as extensive above my knee as below, but I don't have hardly any remaining pain above my knee. Almost all of my PTS pain strikes below the knee.

My long-winded point is that just because you have clotting left over doesn't necessarily mean that you will clot again or that you will experience any long-term pain problems.

Thanks for the replies. I can't get into see my doctor until 2 weeks from now so will know more as to how it compares with the first ultrasound after that. Guess I was hoping the clot had dissolved and the vein would be clear. From what I understand someone that has clotted has a 10% chance of clotting again? Pretty high chance. Guess I am feeling depressed about it all.....

Well, the research I've seen seems to indicate that the single biggest indicator of whether you'll clot is whether you've clotted before. I don't know the reasoning behind that or the science, but I do know that isn't globally true ... just because you've clotted before doesn't mean you WILL clot again.

I mean, most of us who are "long-timers" on these group are here because we're the exception in terms of multiple clots, not the norm. I've been on these boards more than three years and have seen dozens and dozens of people who are active for their six months of treatment, go off warfarin, and never come back. For most people (I think), they clot once and go on with life and never clot again. There's no reason to assume you won't be part of the 90% instead of the 10% (I'm working with the numbers you threw out ... not sure if they're correct or not.)

Hang in there and don't sink yourself into too deep a funk until you talk to your doc. I would suggest writing down all the questions you think of between now and your appointment. Nothing more annoying than walking out of an appointment you've waited a long time for and realizing that you forgot to ask THE question.

Hang in there.

You're not alone. Last mth I had a doppler done...and the clot is still there in the upper thigh area, It's been almost 2 yrs...not totally dissolved. Yes, the chance of recurrence is high especially if the valves are closed..which your doc should check. In my case, they want to still keep me on warfarin for another 6-12 mths and recheck even though I also have a IVC filter. I'm considering looking into getting a metal stent to dissolve it...if it hasn't by than. TakeCare!

I think part of the thing to remember regarding clotting is that there are at least two basic, separate factors that are independant of each other but affect one another which contributes to clotting. Regarding chronic clots that are present inside the veins, from a hematological standpoint they're not more likely to cause clotting because they're basically scars and smooth rather than sticky like a new clot. A new clot can and often will continue growing just because the clotting mechanism in your blood is active and it keeps adding more and more as your blood moves through the vein. That can be true whether the clot is making a big difference in terms of blocking flow or not. There isn't right now anything that can be done to get rid of a chronic clot (a stent will not dissolve a clot although it may open up the vein to allow more blood volume through an area of the vein which has clotted).

Which takes me to the second factor in recurrent clotting which is just the mechanics of the veins. Your blood could potentially be fine but if the veins have large amount of undissolved (chronic) clot then it might in that part of the vein kind of "back up" blood flow, kind of like when traffic goes down from two lanes to one. Since the blood moves through that area more slowly it could increase risk of clotting again because when flow is interrupted, the cells can start to clot together. But usually chronic clot isn't something that's big enough to cause a huge risk that way, the clots really a more like a scar, the vein wall might look thicker there but it's not making a significant difference in how much blood can move through. The other big thing mechanically (which I believe is the more common issue) is that when we get clots the valves inside the vein basically don't work right. Now, the that might be kind of a minor thing (if the clot was small so only a small area of valves are injured) or it can be a bigger deal (if the original clot was present through the length of the vein).

Your doctor will not only have the details of your original clot but since he has done a repeat ultrasound, he knows how things stand now in your veins. You're right there is an increased risk of clotting, but actually there are pretty solid guidelines the doctors follow in terms of recommending whether someone stay on coumadin or not. So if you're doctor wants you to come off, then that's a pretty good indication that you're okay to come off. Even if you were to get a clot again sometimes during your life, it doesn't mean it'd be a week after coming off anticoagulants. My dad had a small clot in his leg and didn't have another for 20 years. Now I can guarantee that during those 20 years, being on coumadin would have been a far bigger risk for him as he's has several accidents including a bad head injury. And I agree with Toss, the number of people we've seen come through here and leave after they finish treatment is astounding compared to the handful of people who have stayed active here because we have clotted several times and have to stay permanently on coumadin. I personally think that unless your doctor recommends something different, it's best to just kind of put the whole clotting episode behind you. I think it's good to have a better awareness of taking care of our vascular health, obviously - making sure to be moving our legs often enough for the blood to move, and staying well hydrated, etc, all the things you already know now.

Thanks for your replies. Very much appreciated. Guess I was and still am in a funk and a "why me" mode. Spring is coming and last year at this time I was running and getting ready for a 12 km. Don't think I can do that right now so its a bit depressing. I hopefully will get over it.

@lwynn

Just curious why you can't do the 12k. I mean, if you're still having lots of pain and swelling, I could see it. But, if you're off thinners and you're not having issues, I don't know why you couldn't do the 12K.

Just my two cents, of course. You could always check with your doc on this kind of thing too.

I have being running/walking a bit - up to 5 km and my leg hurts a bit and feels heavy. I will keep trying....

Often after a clot, whatever your body doesn't natural dissolve turns into a fibrinous scar (known as a chronic clot). Yes, anytime you have an obstruction in your veins you are at an increased risk (how much, hard to say). Most patients recovery fully, other develope a condition known as Post Thrombotic Syndrome (Venous Stress Disorder or Chronic Venous Insufficiency - all the same).

For me, after my clot in 1992 which started in my ankle extended to my hip, I had a lot of valve and scar damage. Wearing compression stockings definitely help to reduce the swelling (not necessarily the pain). For me, running was problematic because the damage valves would expand to golf ball size lumps. I didn't have the same problem biking so I eventually gave up running.

Here are several articles that may be helpful:

http://patientblog.clotconnect.org/2011/07/21/dvt-long-term-damage-post-thrombotic-syndrome/


http://patientblog.clotconnect.org/2012/05/01/compression-stocking-use-following-dvt/#more-1534

R/Tom

Well, yeah, that makes sense. If you're suffering, probably should put off the 12K for a bit. Maybe take up swimming in the meantime? The weightlessness of the water tends to help more than hinder healing legs.

How did you know your valves were swelling to golf ball size when you ran? I have clear veins excet right behind my knee and even though there is no swelling anywhere else on my leg I have a huge bump behind my knee like a golf ball that prevents me from bending down, kneeling, and climbing up the stairs. It isn't getting better and there is a chronic clot there. I still have a lot of pain and it's been over a year now. I had the clot for 4 months before I went to the hospital. Perhaps that cause a lof of the damage that I now have. Is there any way to get rid of the swelling behind the knee?