Deep Vein Thrombosis (DVT) Support Group
Deep-vein thrombosis, also known as deep-venous thrombosis or DVT, is the formation of a blood clot ("thrombus") in a deep vein. It can be caused by something preventing blood from circulating or clotting normally. Join the support group if you are coping with DVT and find others who are going through the same challenges.
So, I had an appointment with my doctor this week for bloodwork and we talked about possible (very, very minor) PTS symptoms I've been having just in the last six months. Mostly a feeling of tightness and heaviness, with occasional tweaks of pain, that usually come on only when I'm in the shower or after a long drive (1 hr+). As expected, she sent me for an ultrasound to check for possible new clots. We didn't expect to find any, since I'm a lifer and my INR has been steady and even running a little high recently.
As for my background, I had my first (and most serious) DVT in 2005. Did six months on warfarin and moved on. When my second DVT was diagnosed in 2009 (four years later), I was told that the first DVT was still in my leg, although pretty much solidified to the vein wall. My vein was still partially occluded from the first clot (a situation that didn't improve with the second clot) and everyone seemed to expect it would stay that way. I know I've had some other ultrasounds over the years and in all of them, I was told the clots were still in my leg and considered chronic. Although, in all honestly, I have NO idea when the most recent thorough ultrasound was. (I had a cursory one done two years ago, where they were looking at the other leg, mostly.)
So, imagine my surprise when the guy doing the ultrasound told me the clots were gone. Small remnants/scarring on the vein walls but otherwise, he told me, no chronic clots and no partially occluded veins. Also, no obvious issues with valves in the leg, although some were a little sluggish on the upper part of the leg (above the knee; both DVTs were below the knee). Recanalization had occurred and he told me that blood flow was normal. My veins, he said, were about what he'd expect to see in any patient years after a DVT.
Of course, I do take info from the tech with a grain of salt, even though he told me that the director of the lab was fine with techs giving results on the spot since they "know what they're looking at." I'll ask for a copy of the complete report from my doc at some point, just for my own records and edification.
Overall, I'm fascinated with the idea that the clots have pretty much disappeared after 9 years. Maybe my leg is feeling weird because blood has new, recently open pathways to travel on? No clue. And, my doc and I are both a little skeptical that I would just now (so many years after the fact) be showing signs of PTS ... so maybe it is something else entirely. I'll also note that my leg is still an inch larger than the other one, although it seems a little more relaxed (i.e., less tight) than it has in the past.
Anyway... just wanted to share in case anyone else had any thoughts on the subject. And, also, to throw out the idea that maybe "chronic" clots aren't always "chronic."
As for my background, I had my first (and most serious) DVT in 2005. Did six months on warfarin and moved on. When my second DVT was diagnosed in 2009 (four years later), I was told that the first DVT was still in my leg, although pretty much solidified to the vein wall. My vein was still partially occluded from the first clot (a situation that didn't improve with the second clot) and everyone seemed to expect it would stay that way. I know I've had some other ultrasounds over the years and in all of them, I was told the clots were still in my leg and considered chronic. Although, in all honestly, I have NO idea when the most recent thorough ultrasound was. (I had a cursory one done two years ago, where they were looking at the other leg, mostly.)
So, imagine my surprise when the guy doing the ultrasound told me the clots were gone. Small remnants/scarring on the vein walls but otherwise, he told me, no chronic clots and no partially occluded veins. Also, no obvious issues with valves in the leg, although some were a little sluggish on the upper part of the leg (above the knee; both DVTs were below the knee). Recanalization had occurred and he told me that blood flow was normal. My veins, he said, were about what he'd expect to see in any patient years after a DVT.
Of course, I do take info from the tech with a grain of salt, even though he told me that the director of the lab was fine with techs giving results on the spot since they "know what they're looking at." I'll ask for a copy of the complete report from my doc at some point, just for my own records and edification.
Overall, I'm fascinated with the idea that the clots have pretty much disappeared after 9 years. Maybe my leg is feeling weird because blood has new, recently open pathways to travel on? No clue. And, my doc and I are both a little skeptical that I would just now (so many years after the fact) be showing signs of PTS ... so maybe it is something else entirely. I'll also note that my leg is still an inch larger than the other one, although it seems a little more relaxed (i.e., less tight) than it has in the past.
Anyway... just wanted to share in case anyone else had any thoughts on the subject. And, also, to throw out the idea that maybe "chronic" clots aren't always "chronic."
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
The thing with the problems 9 years later... I think it depends on how one defines PTS. I mean, if we consider it broadly, as a spectrum of post thrombotic symptoms then sure you could say it's PTS I guess. But I do think it's possible to have occasional intermittent issues with a leg that had a DVT and it not be PTS the way we think of PTS. In other words, I sometimes feel PTS is sort of a semantic thing.
I'd be curious about what the actual radiology report shows. I'm with you. I don't put a whole lot of stock in the tech in terms of a clinical evaluation. Every tech I've had for all things DVTs has told me during the ultrasound their opinions, what they see, etc but I think, if they're able to give results, why not cut the radiologist out of the picture all together and save yourself being charged for their services. But I digress... ha ha!
Definitely not ready to diagnose myself with PTS (and it didn't sound like my doc was either), especially since the symptoms are so mild and came so much later the the initial clotting. Seems like if clots cause permanent damage (which then results in PTS), you'd know that within a couple years of the initial clotting. And, yeah, it does sometimes seem like the idea of PTS is a bit of a moving target...like everyone has their own take on exactly what it is.
How were your valves checked? Did they ask you to stand up or do the valsalva movement? I am just curious.
That said, I hope the occasional discomfort stops bothering you soon : )
@ava27 For checking the valves, the tech told me that if he didn't see them, they were working properly. He said that they're tiny, like little strands of hair, and that they move very quickly so you shouldn't be able to see them during an ultrasound. If you can see them, it usually means they're frozen somehow, damaged, or sluggish, and are not moving as quickly as they should be. He did ask if I'd ever clotted above the knee (not that I know of), since some of the valves there seemed a little sluggish.
I also didn't know that PTS had to be continuous to be considered PTS. Interesting. I really know nothing about it, since it has never been an issue for me.
I'm hopeful that the discomfort will disappear once we hit warmer weather. I'm a big fan of the cold weather in the winter, but it seems to be doing weird stuff to my leg this year.
When I had an ultrasound to check my valves, I was either asked to stand up or lying down while doing the valsalva movement (you take a long breath and then hold it to exert some abdominal pressure on the proximal veins).
I like cool weather better than hot and humid. I notice more swelling (in both legs) when it is hot and humid.
I hope your report comes back with good news!! I
R, loud???? Naaaaaaaaaa.
:wink
:)
Wave at TnT...
I'm glad to hear your possibly-good news, Toss. I'm curious too at how much it differs from the previous ultrasounds. But it's certainly a nice thought! I'm "only" five and a half years in, so maybe there's still hope??
Was your DVT pregnancy related or did you take precaustions through? Worried I cant or shouldnt try now.
There have been some other threads on pregnancy after clotting. It's totally do-able, although you might be in the care of a high-risk specialist depending on if you've got identifiable clotting disorders.
Most ladies do the Lovenox shots the whole way through. And wind up being induced. But there are plenty of babies out there who came from moms who had clotted. I had a physical therapist last year who delivered a healthy daughter after doing the shots during her whole pregnancy.