I wholeheartedly agree with the replies in this thread so I won't reiterate, so much of what has been said is common sense.

I do however take offense with Chrissie's statement:
"If I can heal, you can heal" which like others have pointed out makes it sound like you have the magic cure and we're all doing something wrong if we don't follow your lead.

Sure, everyone heals from a DVT to some extent. PTS on the other hand, is a result of the damage the DVT has caused. It's important to point out that most people do heal and go on with their life with no ill effects.

It's been said PTS symptoms, severity, etc depend on many things which is a fact.

You can tell me all day long that I will "heal" and I can assure you I will always have severe PTS until the day the valves in my veins can be replaced. That's not being negative, it's realistic. It's my life, and although I get frustrated, I accept my limitations and am thankful I'm alive. It's a result of a 2nd DVT that occluded every major vein in my leg from pelvis to foot. As technology improves so does the prognosis for people with proximal DVTs. If I had proper intervention at diagnosis, I would most likely be in better shape.

My first DVT was just as extensive in my other leg. I was put on complete bed rest for many months. I did not develop PTS as a result of that DVT. That was the old way of treating DVT but obviously, exercise and herbs had nothing to do with that recovery.

I'm not sure what positive info you were expecting to see on the internet about healing from a blood clot. It is what it is. DVT's are dangerous. The info about PTS is quite honest in my opinion. Not everybody gets it and some experience it worse than others. No magic cure. The same can be said about a lot of health problems. .

I'm glad you're doing well but it would have come across differently if you weren't so defensive and closed minded. It sounds like you have something to sell and you really don't.

I think that it is important to remember that when looking on statistics on PTS occurrence is that the severity of PTS symptoms are very variable. I have also seen from the literature that a large proportion of patients with DVT get PTS, typically from 30-60%, and sometimes higher. However, a very small proportion of patients get serious PTS symptoms like ulcers, generally less than 5%. This would be ulcers and serious swelling Jeremy1999, your calculation of the 25% value with PTS wounds is strange, i..e (300/100.000)*100=0.3% get PTS wounds. I find that the value of 25% of patients with PTS developing ulcers far too high with what I have read. The degree of PTS is measured with the Villalta scale, and is based on visual signs and symptoms. In my case, my PTS can be classified as being mild and does not really affect my life so much. I can only imagine that the life of a patient with serious PTS is, and it is difficult to deal with as it does not, like many other illnesses, improve with time. Measures can be taken to increase the flow by compressing the veins (compression stocking), mechanically pump the blood (venowave) or if the problem is a residual clot restricting flow, removing the clot. In most cases the PTS are caused due to damaged valves, and so far all trials that have involved inserting artificial valve veins have not been not that successful at all, or have a poor long-term prognosis.

Flapdragon, I will tell you exactly why I reacted in such an emotional way to what you said to me. It's because you either lack the ability to correctly interpret what is written or you willfully disregarded my actual words and twisted them around to make yourself again into some sort of hero/guru/mentor/only-ray-of-light to the DVT downtrodden.

When I described my situation, I shared that I deal with PTS symptoms even while pretty much already doing the same things you tout as some sort of cure. And while I have worked really hard both physically and emotionally to regain my life, I still have PTS. And I recognized that other friends of mine here have it worse than I do, probably because they needed the treatment I received in the beginning but they didn't get it. That's not their fault, and the fact that they experience debilitating symptoms from PTS isn't because they've not done enough good for themselves and eat meat sometimes; it means they got a rotten deal in terms of having really significant clotting and not getting enough treatment early on. I said that while healing from DVT will happen pretty much whatever we decide to eat, no one can be sure of what extent any patient will heal, because there are far too many factors which contribute to the outcome.

In your response from the other day, you twisted my words around, and you said something to the effect of 'How good that you're just lucky and have healed, but that's not true of everyone and I'm here to give them hope.' First off, I never said I just automatically healed. I even said in that first response that I've worked really hard to get to where I'm at now, and the truth is, I still have to work hard every single day because the PTS which I experience does affect my daily life (and this somehow despite the fact that I already do your magic recipe of diet and exercise, and have been for the nearly seven years since I got DVT). However, my life is not hopeless, and a lot of that has to do with appreciating what I have rather than lamenting what I don't.

But what makes me angry is this assumption you seem to have that your experience should/could be everyone's. You keep saying that you want to come and spread positivity, but if that's truly your intention, it's not how it comes off. Stephan is right, much of the animosity is to do with the way you present it, because instead of allowing yourself to just be another patient, one who had a positive outcome that you want to share, you put yourself up on a pedestal and act like you have something to peddle, and that if people follow you, then it will heal them. That's unrealistic, and it demeans the people who struggle terribly, every single day, from the results of their DVT, despite having done everything they possibly can to improve. Whether you realize it or not, you intimate that people whose aren't better have somehow failed themselves.

By all means, come and share your experience, tell us what helped you, but don't put yourself above all the rest of us or act like you've got some secret recipe to getting better. Do you think you're the only one who has ever spent hours and hours researching to understand has happened and what to expect? I think we've all done it. I used to post a lot scientific research here in my earlier days of recovery, but that tends to be more the pastime of the newly diagnosed, and you outgrow the desire to do that after a period of time. And I don't think a person has to be here posting constantly (which, by the way, I don't, and neither do many of the others who have responded to you). In fact, I think that for a lot of people, an important part of getting over this stuff is to get back to their normal life and stop spending so much time poring over medical articles and support groups. I do keep an eye on the discussions here and participate if I feel that I have something to add to help people who are newly diagnosed. And guess what? That's generally positive, as in, 'Be patient, give it time, get some exercise as you can tolerate, and your body fixes the clot.' I usually try to avoid people who get under my skin, but what can I say, every once in awhile I'm in a mood.

I am happy for you that you've had a good outcome, and I think it's worth sharing. But I disagree that anyone can do the same thing and be sure that they'll heal to the same degree you have. Goodness, you don't even know whether you'll reach the level of recovery you tout, because you're projecting to be completely recovered in a year and a half, yet you don't know that your progress won't plateau at any time. I've had several blood clots, in my own body, and with my same way of dealing with it physically and emotionally, yet the outcome of each has varied, because even with the good things we can do for ourselves, there are also factors outside of our control.

I hope you keep improving and sorry I find you personally so annoying.

We can argue numbers all day, but that only five percent of people with PTS have severe symptoms is way too low. Here is a cut and past from a study that proves otherwise. I will also post a link to the entire study and what they were looking for.

Two important recent studies that addressed the issue of timing of onset of postphlebitic syndrome demonstrated that postphlebitic syndrome in most cases becomes established within 1 to 2 years after DVT. Prandoni et al. conducted a prospective study of 355 consecutive outpatients with a first episode of DVT who were followed biannually at a single diagnostic facility in Padua, Italy, for up to 8 years.5 Few patients were lost to follow-up. The outcomes studied were recurrent DVT, postphlebitic syndrome, and death. Postphlebitic syndrome was diagnosed using the Villalta scoring system described earlier.4 Overall, 84 patients (23.7%) developed postphlebitic syndrome, ((((30.2% of whom had severe manifestations)))).

Here is the link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1495464/

@jeremy... there's some tricky math in there.

I think that they're saying that 30.2% of the 84 patients had severe manifestations. That's about 25 patients.

Compared to the original patient pool of 355, those 25 patients is about 7%, which isn't much more than 5%.

They aren't saying that 30.2% of the patients in the study had severe manifestations... overall, from the study you quote (and I admit I didn't read it), it sounds like about 7% of people with a DVT could wind up with severe PTS. Still not a huge number.

THE SKY IS FALLING, THE SKY IS FALLING!!!!!!!!!!!

You can have some degree of PTS and not suffer or experience any real issues. And when I recommend people do their own research, it's so they can take your emotion out of the equation and determine for themselves if they need to freak out and panic.

Very few people, percentage wise, get SEVERE PTS. That's the freakin' fact, whether you disagree or not.

Also people with other serious health issues, and I know some of you have them, could complicate a situation so that it's not just PTS causing the issue but a set of other conditions causing symptoms not based solely on having had a DVT.

There are a lot of graduates from Google Medical School. Makes for a lot misinterpretation of information and passing along misinformation.

The bottom line is this. When you say you can heal if you do XY and Z, it implies that when people don't do XY and Z, then it's somehow their fault that they have PTS. It also oversimplifies the problem. You diminish the experience of the few people who've been members on this board who actually do have severe PTS, through no fault of their own, when you do that.

I don't need to post here all the time, but I will when I think something feels not quite right with the info being disseminated .

I never tire.

It said that 84 patients were diagnosed with Postphlebitic Syndrome out of the 355 patients total. Out of the 84 patients that developed Postphlebetic Syndrome, 30.2 percent of them developed severe manifestations. Even if the numbers are at seven percent, considering that there are hundreds of thousands of new DVT cases each year, that can translate to a lot of people who are severely impacted by PTS. For those of us who have severe PTS, to just blow it off like "oh it's only 7 percent of you guys, it's not that big of a deal." It is a pretty big deal for the seven percent who have daily struggles with this condition.

Any how, I don't want to get into a who is worse than this or that person type of discussion. I just want everyone to live in reality. I'm done with this conversation now. I don't want it to get any uglier than it has already gotten. I just gave the quantitative numbers and outcomes. Everyone's qualitative experiences will vary greatly from one person to the other. And for the newly diagnosed, don't let the statistics alarm you, just arm yourself with information and take things one day at a time. Sometimes the information is scary. When I read that a certain percentage of patients with saddle PE will die within 30 days of the initial diagnosis, I was scared. But those are the statistics. It's good to know what you're looking at so that you can plan accordingly. Noe of this is pretty. It's all nasty stuff, but we have to live through it the best way we can. Information should not be tucked away because it is unpleasant for some. With that I'm out of this debate.

Jeremy1999 interpreation is correct. Jeremy is referring to Prandoni et al 1996 paper but patients with Villalta score >15 or ulceration were classified as having serious PTS symptoms and these were 25 out of 84. Recent studies have generally shown much lower rates of serious PTS symptoms. It is important to read these studies carefully as the composition of the patients (e.g. age) and the duration of the study can all influence the results.

Here is a copy-paste from a more recent paper where PTS rates are evalauted based on several studies http://www.bloodjournal.org/content/114/21/4624?sso-checked=true

"Incidence of PTS after an episode of DVT
On the basis of data from contemporary prospective studies with
long-term (ie, 12 months or longer) follow-up, 20% to 50% of
patients with DVT can expect to develop PTS and 5% to 10% of
patients will develop severe PTS (severe symptoms and/or severe
signs, which may include venous ulcers). In most cases, PTS develops within the first year or two after DVT."

Jeremy, that's your take away from this discussion, that we're saying severe PTS is not a big deal? You've misunderstood.

What is being said is from a STATISTICAL standpoint, if 7% (since that was noted) get PTS, doesn't that mean that 93% DON'T GET severe PTS? What the hell is so grim about that? I have ulcerative colitis, which increases my risk of colon cancer by 30%. If I followed the line of thinking going on here, sheesh, I might as well throw myself off a bridge and end it right now.

Here's a summary from the link I included in an earlier response, from ClotConnect, a reputable place to get patient information:

" An estimated 330,000 people in the United States have the postthrombotic syndrome. Typically, the more extensive the DVT, the more severe the symptoms of postthrombotic syndrome will be. However, this is not always so: even people who have had very extensive acute DVTs with severe symptoms may recover completely and may not be left with any chronic (long-term) symptoms. Approximately 60 % of patients will recover from a leg DVT without any residual symptoms, 40 % will have some degree of postthrombotic syndrome, and 4 % will have severe symptoms. The symptoms of postthrombotic syndrome usually occur within the first 6 months, but can occur up 2 years after the clot. If a patient has done well for 2 years after the clotting event, it is highly unlikely that he/she will develop the postthrombotic syndrome."

Data is just that. Data. It's not intended to make us feel good or bad. That's something we apply to the data, our emotional response to it and thus,our very subjective interpretation of it. I'm guilty of that too, until I remind myself that I'm not a statistic or data, but just a person, who tries to live life without having my ulcerative colitis, or DVTs, or PTS or PE experiences consume my thinking and hanging over my head.

Anyone reading this who is new here: You're gonna heal because that's what your body does naturally, the majority of the time. There's no magic, there's no sure fire way to avoid PTS, but if you have concerns talk to your doctor about how you can try to prevent it.

Ok so if it's really 5% to 10% develop severe PTS, doesn't that mean that 90% to 95% won't develop severe PTS? I guess I'm still stumped on where are the grim and dismal statistics for developing severe PTS.

Am I crazy? Seriously, am I just missing the boat on what people are all bummed out about? If you have severe PTS, YES, that's a pisser and for that I am sorry. But just from looking at the data alone, help me understand why that would cause someone to feel depressed or hopeless or that it's all doom and gloom. I truly have to think it's really a matter of perspective and personality and how people cope, and nothing more.

You know what's funny? I'm not even that optimistic of a person naturally and yet I think, what is everyone so bummed out about?

Flapdragon, you had BRAIN SURGERY and yet, it's the fear of getting severe PTS that has you worried?

I feel like I'm taking crazy pills (for all you Zoolander fans out there)

@jeremy

I totally agree with you that even 7% of severe PTS sufferers is WAY too many. I'm not trying to dismiss that at all. I think we'd all be happier if there was no PTS at all and I know there are many people on here that have had their lives severely impacted by PTS. I'm really not trying to downplay that at all.

My beef was mostly academic ... I just disagreed with you saying that 5% was way too low for severe PTS sufferers, when I think we all agree that it's in the ballpark, at least. Again, not saying that your experiences don't matter or that you're such a little number as to be unimportant ... I'm just a nerd hung up on the numbers.

And, yeah, I'm done with this conversation too. CAN'T WE ALL JUST GET ALONG? ALL THIS VITRIOL IS POISONING THE WATERS.

Well I certainly didn't feel like I was being abusive so if someone took it that way, I'm sorry you have.

I don't think a heated discussion, asking questions of each other, asking people to explain what they're talking about and countering a position is a bad thing. If we are going to throw around data and make claims, we all should question each other. I don't think arguing is necessarily a bad thing, but I don't even feel like this was argument. I've been in actual arguments with people in my real life and they don't look or feel like this discussion. Maybe my threshold for disagreements is more generous than most.
I want everyone to be well. I want everyone to be pain free and whole. I'm happy when people feel good. But to me, nothing poisons the waters more on a medical related support forum than misinformation or touting cures and treatments for PTS, DVTs, PEs or any other condition that aren't scientifically documented, in my opinion.

I don't consider ANYONE here on this forum a subject matter expert, including myself. I just don't. If you're a medical doctor who treats DVTs or PEs or a scientist or researcher who works in the field of hematology, then sure. But otherwise, no. So in light of that, I'm not just going to accept explanations that don't add up or make sense to me.

Sheesh, if we don't question each other, we're nothing but sheep. That can't fly with me. Sorry.

@jeremy and stefano: I want to thank you for your measured responses. It did not occur to me that my initial post may have come off as a universal cure. I certainly did not mean that. Each body is different, but I do think proper nutrition and exercise work wonders for curing most ailments.

My main purpose here was to post some hopeful messages for people who have PTS after a DVT. I did hours upon hours of research directly after my event. I found only negative info about people afflicted with PTS. I DO want to spread some hope that healing is possible. This is not a message readily available through the internet, medical professionals or medical libraries (in my experience at least).

I do not have a PhD, but I do have an MA in linguistics, which means I have a high level of reading comprehension and research skills.

As Stefano understood, I am here to spread some hope for people with DVTs/PTS aftermath that is depressing and disconcerting. That is all I wanted to do. If my initial message came off as a definitive cure, that was not my intention. I am just sharing my experience and some hope I feel is lacking when it comes to PTS.

@rmb: I had some issues after brain surgery that were quite challenging initially. Fortunately, what I do for a living is known to help brain functioning after severe interference with the brain. I am a translator. Doing the mental gymnastics that comes with thinking in two different languages simultaneously is known to help with cognitive function.

I started working again two weeks after brain surgery. I went from being able to concentrate intensely on multilingual documents for 9 hrs. straight to being able to concentrate for only 2 hrs. Then I would cry for an hour because it was so taxing on me to work for 2 hrs. Over the course of a year, I regained my concentration, and due to my persistence in regaining that concentration, I can now say my productivity is actually 30% higher than it was before my brain surgery.

Now, the lasting and echoing pain that PTS has given is far outlasting the brain surgery repercussions. Chronic pain sucks!

The relief I am finding is from whole foods and exercise to the point where I am becoming a hard body. When I first experienced PTS symptoms after my DVT and was diagnosed with PTS, I was left with 0 hope.

The PTS is WORSE than anything else caused by the brain surgery. That's why I decided to post some positive messages here about healing from a DVT and PTS.

I am not fear mongering nor am I saying I have a definitive cure. I can only add a some positive content to a landscape that leaves most people with PTS with very little hope.