@CAT @RMB
Now I got what you guys meant. I guess there are two different ways for PTS to get onsite. Some may feel the swelling and pain all along. Some may get better at some point and then the symptoms starts to get worse and finally reaches a plateau.

I read from one of the clotconnect articles that most PTS can be diagnosed within 6 months. This is totally different from what I read in here and what the doctors I've seen told me. I guess there is some discrepancy in the definition of PTS. It somehow seems like a ill-defined medical term...

We definitely need more research on that. There are so many active people whose lives are completely altered because of DVT and PTS. Finger crossed for more breakthroughs in the near future!!!

Well said Ava. I've had several doctors all tell me different things. All I know for sure are my symptoms and how they affect my life. I learn more by sharing stories and information with people who are in similar situations.

Ava is right. There should be much more effort put in on PTS so that people can be relieved from these intermittent symptoms.

And I always wondered what a PTS report would look like. Would they mention about the residual clot or veins narrowing or valves damage in the report?

I believe there are studies being done regarding PTS. But really, the push should be for DVT prevention first and foremost. If you prevent DVTs that would solve for PTS. Simple as that.

A standard ultrasound is not going to be able to diagnose PTS from what I understand. There are certain types of scans that may detect blood flow issues and valve damage, so I suppose that's what a report from these types of tests would show. At the onset of my PTS symptoms, I would not have had extensive testing done to know for sure. Like I mentioned the only test I had was to rule out another DVT because it really looked like I had another one. So once that was ruled out, then what I'm left with is PTS based on clinical symptoms. I mean, really, if you have symptoms of PTS, then treat it like PTS, try to alleviate your symptoms and that's all you can do, whether you have a report that tells you that you have PTS, or whether your doc looks at your leg and says, yep that's PTS.

If you've not read this page from INATE already, it sums up everything pretty nicely.
http://www.inate.org/en/1/2/6/23/default.aspx

I think this excerpt is relevant and should be taken into account when trying to figure out what's going on:
"It is important to remember that these signs and symptoms are not specific to post-thrombotic syndrome and could be caused by other factors, such as poor circulation in smaller veins, advanced age, weight gain or leg injury."


My personal opinion- don't spend too much time worrying that you may get PTS. I think we're getting bogged down with having a definitive diagnosis vs just treating a collective set of symptoms. If your stockings seem to be helping YOU, wear them. If not, don't wear them. And then just find a way to keep moving forward.

@Rmb, You think I am obsessed with PTS, don't you? LOL :D
Truth to be told I am a little because the symptoms I experience are very similar to the ones I had when I had my first DVT.. Of course spreading awareness about DVT is much more important because for many people it is preventable. But I do feel each and everyone of us must know the difference between PTS and a new DVT.

I try to press my calf on both the sides. Sometimes it gets easily compressed but sometimes it does not. And if the symptoms improve with resting the leg then perhaps there's nothing to worry about. I do get irritated with the cramping and the pain though and it constantly reminds me that I have to walk again for a minute.

And now that this trial proved that there's nothing much we can do we just need to try and rest our leg as much as possible and hope the symptoms do not worsen.

@san4555

I don't know that I agree that it is important to know the difference between PTS and DVT symptoms. For one, I don't think there is a lot of difference between the symptoms of the two and I think most of us would be hard pressed (early on, before an official PTS diagnosis) to really be able to differentiate between them on our own. If you've been wrestling with PTS for a while, you probably have gotten pretty good at knowing what the symptoms are for you particularly, but I'd never encourage self-diagnosis.

For two, I just think the best policy is that if something changes, gets worse, or carries on longer than it should, it's time to check in with the doc. I mean, having clotted, there's no way I'm going to sit at home and be like, "well, it's probably just PTS" if things suddenly get worse. I'll get it checked out, for sure. And, really, even if you do have PTS, that's not a bad policy to keep in place.

At some level, it is about knowing your body and noticing if something has changed or gotten worse. That's the time to get checked out, just as a matter of course.

Hahah, San, yeah I do think you're a little obsessed ; ) I just feel bad for you that you're so young and feel so enslaved by your body and doctors and tests. I mean, that's just my impression of course. I could be totally wrong.

I don't know if you have PTS or not. It could be. It could also be that because you also had surgery to that leg, that could also be posing discomfort for you.

San, are you on any exercise restrictions because of your surgery? If not, I'd really try to incorporate some exercise into your routine. Exercise can actually help with the PTS symptoms. I find bike riding to be really therapeutic for my leg.

I disagree we need to rest our legs as much as possible but that may be my own feeling on what that means. I think when we have down time and we're sitting, we should elevate our legs and I'm sure standing all day is not always good, but unless you're in the acute stage of a DVT or your doc has you on exercise restrictions, I think think being inactive and babying your leg too much does more harm than good in terms of DVT recovery and trying to work through PTS. Just my opinion of course.

So true Toss. Having PTS doesn't mean I chalk up every symptom to PTS if suddenly things changed or became different. My PTS looks like a DVT at times in terms of redness and swelling, but it doesn't feel like my DVT felt. So that's really what I try to go on, my sense of what seems normal for me, and then what seems not normal for me. It really is getting in touch with your body and sorting out what's what. It can be hard to do that and you have to teach yourself that. It's even harder to do if you find it impossible to be objective about your body.

There are no definitive black and white answers with any of this stuff, which I know is hard to accept. So you go on instincts and what seems to make the most sense.

I tend to agree with Catalyst on this issue. The progression of PTS is a very insidious process. I haven't read all of the studies that are currently out there with regards to PTS. But I have seen some statistics that state that PTS can and does occur as far out as ten years from the initial onset of a DVT. I think some people can get by for quite some time with slight to moderate vein/valve damage in the affected limb before the veins/valves start to fail. The one key consensus that all of the experts seem to agree on is the fact that blood clots must be treated immediately, aggressively, and that possibly removing the clots mechanically is what can stop PTS dead in its tracks. I was reading a study a while back that stated that "Heparin/Lovenox" had an anti-inflammatory effect on the veins. They stated that if Heparin or Lovenox was given for at least a few weeks after the initial onset of a DVT that it could prevent the inflammation that occurs in the vein when the body is removing the clot naturally.

Although there seem to be many studies flying around about when PTS first presents itself, I've found through my personal experience that most doctors have no clue about the condition. Some doctors like my Pulmonologist simply state that it is nothing to be worried about - it's just some minor pain and swelling and you can learn to live with it. There are a lot of people who become severely disabled from PTS - yet there is no mention of PTS in the list of diseases that are covered under SSDI. If 2 million Americans are suffering from blood clots each year, and over 300 thousand of those cases result in death by PE, why aren't we hearing more about DVT, PE, and PTS? Why aren't doctors becoming more aware of this condition? If there are 2 million cases of DVT each year, it will only take 50 years for 100 million people to be affected in some way by this medical complication. That will be almost 1/4 of the current US population. That's real food for thought!

I myself am not 2 years out from DVT, 17 months out from diagnosis. My symptoms remain the same. I have big bulging veins behind my knee, I can't climb up the stairs any faster than at an old mans pace, and the pain in my leg is constant. One minute it will be a level 5 pain and the next minute a level 9. Driving a car is very painful, if I work on my feet longer than 2 hours at a time I get the revenge of the leg, and I am still having to take pain meds to cope with the pain. I'm not trying to be all gloom and doom - I'm just reporting the facts as they are happening to me.

Any how, I know everyone's individual story is different. I'm kind of envious of some of you guys who do not have pain, or have gone on to be more productive than I am at this current place in time. I am also glad that most of you all are doing much better now than when you were first diagnoses with DVT/PE. I however remain cautiously optimistic for myself and anyone else who is still suffering from ongoing swelling and pain. I hope the medical field gets their arses in gear and figures out a way to help the many of us living with PTS.

@Toss, Yes I have been having these symptoms for a while and now I am confident I can differentiate the PTS and a recurrence(god forbid..).

@Rmb, Yes I am having certain restrictions still because my knee is not fully healed. So I try to walk as much as possible as that doesn't hurt my knee much. My knee is improving very slowly but it surely is. I will just give it another 6 months or so. My Orthopaedist has in fact said that it is good progress that I made in the 6 months after surgery especially considering the fact that I had a DVT in the same limb. Once I recover I am planning to start jogging twice a day as that seems to improve the stamina as well as promote blood circulation. I am wary of the fact that too much rest to my leg might again put me at risk for DVT but at the moment I am just relying on ankle pumps and walking to keep my blood from pooling.

I think walking is a great exercise, San, especially when trying to recover from both a PE and a surgery.

I know for me, any kind of high impact exercise really bothers my DVT leg so I can't really do anything that requires a lot of pounding on my leg for a long period of time. For some reason, walking on pavement or hiking doesn't bother my leg, but walking on a treadmill does. Can't figure that one out. So it's just a matter of finding activities that work for you and that you like to do.

I'm glad to hear you're being active and that you're making good progress with your injury. Keep focusing on that because that will carry you through this long process of recovery.

@jerry

That sounds terrifying... So everyone gets valve/vein damage from DVT. And eventually we will all suffer from PTS at some point in our life? That's such a depressing thought... I really hope that the doctors can figure out a way to treat those with PTS.

Not everyone is going to get PTS. It's unfortunate that is the take away from this thread

Please go back the Clot Connect link RetiredNavy included. Nowhere does it say a 100% of DVT suffers will get PTS.

Also please remember that cases of SEVERE PTS are small percentage of all PTS cases. Most cases of PTS are manageable.

None of us here are experts in the field of hematology or vascular medicine. This is a site that generally includes anecdotal information, so remember much of what's posted here is based on personal experience and interpretation. RetiredNavy has connections based on the work he's done with ClotConnect so he's going to typically have solid information. Will the data change as scientists learn more about DVTs and PTS? Yes. But I think we have to just step back a bit and remember statistics don't reflect the whole story, or reflect each and every person's experience. That's why you have to really be careful about quoting numbers and data. We have no idea what that data is even based on, who was included in the studies, what their specific clotting experience was, etc.

I'm afraid people are starting to get needlessly worried here and I'd hate to see new members read this stuff and think their future is in the toilet.

If you spend every day going forward worrying about getting PTS, you're stealing precious time and energy from things today.

@rmb
Yes, I was starting to get needless worried about PTS when I was following this thread. I guess I just have so much hope for the coming year especially at Christmas time. And I am overly emotional right now.

You are absolutely right, rmb. Worrying about things is not gonna help. I definitely need a stop sign in my head whenever I am starting to turn nuts...

Oh, oh, Merru Christmas to everyone!!!!