Clot Connect is a good patient resource for all things blood clot related; here's info specific to PTS. It's neither negative or positive, to me, but just simply information.

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

Well, I am going to disagree a tad on something here, because I read this post in the beginning, but didn't want to get involved, and kept my mouth shut. I probably should continue to do the same, but I'm in a mood today and can't help myself.

Healing is possible, absolutely. In fact, not just possible, it's probable. Without having to go all new-agey or whatever with your diet. I'm not knocking anyone for keeping a good diet and exercising regularly, I mean, to me that should be a given for anyone, whether they've ever had blood clots or not. But healing after a DVT, even a "proximal" DVT, is going to happen because it's what our body does. I don't disagree that we should individually create the best circumstances we can to promote our healing, but I don't necessarily think that means we have to become semi-vegetarian or that there's no hope for people who won't completely turn their diet into all whole-foods or whatever. Because although you say you're here to provide hope, what you're doing is actually saying that there's hope only for the select ones who will change their life to the same degree as you have done yourself. For those who can do it, great, more power to you and all that, but healing will happen even in the non-health-fanatics.

There are so many factors that go into the level of healing that a person experiences, though, that it's an injustice to the entire situation to say there's an easy, fool-proof solution by eating a certain way. Some of these things include where the clot was located, how many vessels were involved, how long they were present before treatment, what type of treatment was received....to name just a few off the top of my head.

I'm happy for you that you're healing so well, and I appreciate the good intentions of wanting to share your experience with others. I think what rubs me the wrong way is the way you present your experience, that rather than just sharing how you have healed despite doctors' predictions and the things you feel helped, you present it almost as though you're the first person to improve from this sort of clot and that you've found some magic solution to healing, when honestly what you're sharing is more along the lines of very common sense.

I think if you had taken any time to read about the topics of healing after DVT and what experiences people have had with PTS on this site prior to writing your discussion, you would have actually found a long history of patients sharing positive experiences and hope for good chances at healing to those who are newly diagnosed. Because I would say the recurring theme here is - Be patient, it takes a long time but things do get better. Because I really don't think most of the topics here have been gloom and doom. Yes, there are some experiences shared by patients who have had greater difficulty in recovering, because that's a reality as well. We are all of us individuals, with unique experiences with our DVTs, which means we can't just say across the board what someone else's experience will be, even if they do A, B and C, because what we do after a DVT diagnosis is only part of the equation in regard to healing.

Also, lest you think I'm some junk-food slob who is trying to defend my way of life, I actually mostly eat raw fruits and vegetables, and I cook at home from real ingredients, not boxes, cans and the like. Neither am I a light-weight case of DVT either. I also nearly lost my leg from DVT because, as my doctors described it, all of the veins in my leg were clotted, from my abdomen all the way down, and I had two emergency surgeries to save it. Along with surgery to clear out the massive clots in my lungs. And I have been present on this site for the past six years since that happened to me, sharing the ups and downs of recovery. There is no doubt I still have PTS, but neither do I consider that the end of the world. PTS does not automatically mean that you're debilitated. I don't have it as badly as some people have it, and my doctors never expected me to do as well as I am either. I have worked hard to get this well, and my leg does not limit my life even though I have PTS. Part of healing can also be changing our perceptions and expectations of normal, by which I mean we might accept a level of pain which we wouldn't have before, and still we live a normal life.

So essentially, while I agree with much of the heart of what you're saying, what I'm trying to say is that you're not telling us anything we don't already know. There's still no magic cure-all for DVT. We anticoagulate, live as healthy a life as we know how to, and let the body do its job. I am happy you're doing well, and I appreciate your desire to share positivity rather than negativity, but I might suggest making your experience part of the collective rather than appearing to believe you're so unique in such a self-congratulatory way.

That's where I was kind of stumped with the gist of this topic, the implied secret to healing when really, there is no secret; our bodies typically heal on their own when it comes to DVTs, if your patient, without extensive dietary changes or even being all that positive, frankly. I mean, I don't look at PTS with a doom and gloom outlook, so maybe it's just a difference in perspective on the data that's out there. I already feel the odds are in everyone's favor to not have a horrible outcome. In fact, most, and I mean the majority, of PTS cases are not severe. That itself is positive.

I just don't find the prognosis all that grim . Most people I've seen come and go on this board have had proximal clots. My DVT was proximal; I also had a second DVT in my arm). I even disagree with the information on the link I posted that you can diagnose PTS at 6 months. That's too soon in my book, considering how much improvement can occur during that time, as your body is still healing.

Exercise and eating right are GOOD things, that is a fact. And I think having a good attitude about life in general goes far in overcoming any obstacle in life. I also think when you eat well, you have more energy and feel better overall, and with respect to DVTs and PTS, movement itself is really important for recovering from a DVT and it can help in dealing with PTS. All that being said, I still wouldn't assume that a person will have severe PTS because they had a proximal DVT, nor would I assume a person's diet and thought process threatens their recovery.

I'm not naive about PTS or even severe PTS. Like I said, I have PTS, but it's not severe. Mine is manageable and certainly doesn't depress me or keep me down. I walk daily and ride my bike and do all kinds of activities I did before my DVT. I know a couple of people here who do have severe PTS, for real. They were otherwise healthy, active people and now they have life changing, debilitating PTS. Why them? I don't know, but I bet it's not because of their diet or they weren't upbeat enough. and I'd be insulting them if I were to imply that.

I just think there's so much grey in who gets PTS and to what extent, coupled with whether someone has other health issues going on that can impede healing, that I'd be hard pressed to think, well if you only ate better and had positive thoughts, you'd not have PTS. Sorry, that doesn't add up for me. I will say that people are generally healthy often heal quicker than some people. I had massive PEs so I do think because I was active before the PE, that it may have made my recovery quicker... maybe, but who knows for sure.

Anyway, I'm not arguing with anyone, just providing a different perspective.

I am posting positive messages to people who have a grim prognosis and have PTS from a proximal DVT. If I can heal, you can heal.

Your body will be different from mine, but a whole foods diet, a lot of exercise (with trainers too!), and a positive attitude have helped , my affected leg immensely.

Obviously each body will be different. My purpose here is to let you know I can walk around on this leg for about 4 hrs. before I need a compression stocking again.

I went out in heels the last weekend without a stocking. Leg was swollen by the time I got home :-(, but not painful.

It will take a long trek of taking care or your nutrition and exercise to get your limb back toward normal.

As far as the other people here who want to disagree: There are tons of sites on the internet that are really grim about recovery from clots. Clot Connect is a good source for info, but has no positive info about recovery.

YOU CAN HEAL!!!

I will not diverge from that message because there are almost 0 resources on the internet that talk about actual healing from PTS.

@ShilohsMommy

The prognosis for people with proximal DVT + PTS is grim.

I am on my 4th year of dealing with the aftermath of a proximal DVT.

Just because you are of the percentage of people who don't have problems, it does not mean others don't.

I am spreading a message of positivity to those who have issues after a proximal DVT.

Once you have PTS, there is little but negative info on the internet about it. You will find info about how to treat advanced issues of PTS, but not a whole lot about how to heal from it.

That's what I'm here for.

I mean heal from it [before advanced issues happen...]"

I think the term "grim" is very subjective. Everyone, just live your life. When you do that and step out of your head and not think about your situation 24/7, you will feel healthier and more positive. It's not magic.

I'm so sorry that you're so full of yourself that you can't see what people here have actually written. I am not just that small percentage of people who have no ill effects from my DVT, and you belittle what I have fought to achieve in my recovery by acting like I've just won the lucky DVT lottery. I still, nearly seven years after my DVT, deal with the effects of it on a daily basis. However, I have improved far beyond any hypothetical prognosis that was given at the beginning of my treatment. I'm not saying it happened by magic, in fact I agree with much of what you did say about exercise and such. However, you pop in here from time to time and act like you have discovered some great secret to getting well after DVT, and the fact is you haven't "discovered" anything a myriad of people haven't before you. And those of us who regularly spend time on this site and others like it are here constantly to provide support to people who are newly diagnosed and perhaps feeling hopeless, which is a far cry from what you proclaim yourself to be doing, jumping in here from time to time (it's been what, six weeks or so since you last blessed us with your presence). I suspect more than anything else you added this just to bump your topic back up to the top because you certainly didn't have anything new to say on the subject.

Blah, blah, blah...
Reality is that if you are a lifer on anticoagulant because you have had two clots, one in each leg AND have had PTS in one leg, reality is grim.
AND I'm not talking about clots that happened last year, I'm talking of one in 2007 and the other in 2010.
So your secret recipe does not work for everybody.
That's all I have to say.

yeah, I think it's a matter of perspective. To me, dropping dead from your DVT breaking off and causing a PE is grim. Having a DVT where you recover and go about your business should be seen as the blessing it is. That IS positive. It's a DVT, not the end times.

PTS is a reality. Freaking people out about possibly getting severe PTS is an over emotional response. And PTS fear mongering disguised as being "positive" is a warped agenda. I've been on this board for a long time and my hope is that new folks here take the poster's idea of "grim" with a grain of salt. Do your own homework and keep it in proper context and perspective.

@Shilohsmom:

Wow, I am not sure how my response created such an emotional response from you. I really do come here just to spread some positivity.

I made practically a full-time job of researching DVTs and PTS after I was affected by one. The reason I am posting the things I am posting is because I have absolutely scoured the internet about this issue and have not found much positive info or info about how to heal from it.

I'm not sure why you think I am coming here and "thinking I am so good" or whatever...

And should I be on here constantly? Is there some sort of credibility on here when a person posts constantly, posts negative things, and reacts in a way that is unwarranted?

I wasn't attacking you. I merely disagreed with you.

Again, I do want people who have had basically "unhealable" DVTs to know that there is hope. I needed this message back in the beginning and couldn't find that message anywhere!

This is my reason for posting. I am not here to argue about it.

I am here to spread a message of hope I have not found among all of the forums I've scoured, all of the sites I have scoured and all of the specialists I visited.

DVTs and the long-term aftermath are depressing for everyone who experiences it. I am spreading the word of what has helped me because I was left with no hope and almost no info after I was afflicted with this condition.

I continue to experiment on myself to relieve symptoms. I will share with others the outcome. I already explained that other people's bodies will be different, but I encourage everyone to keep positive and try whole, natural foods that agree with their own systems. I also eat whole foods that encourage cell turnover and are shown to improve cardiovascular health. I workout on a regular basis, which is also helping immensely.

That is all.

@RMB:

I have has PTS for a little over 4v years. I was 38 when I got the DVT as a repercussion off brain surgery.

I HAVE PTS!!! I have managed to move off blood thinners and have improved my leg with exercise and whole foods + time heals as well.

I am not fear-mongering.

My whole point is to help people who have long-term problems after a DVT.

***I*** needed some positive info about PTS recovery in the beginning. I am now able to share my hard work with others.

My hard work = hours and hours of research, putting the research to work, and gaining positive outcomes.

Most of what a person who has PTS after a massive clot is that "it's best to just prevent it."

It's TOO LATE!!

It's depressing when you develop PTS symptoms right away because the info about PTS is GRIM!! I had leg ulcers, etc., to look forward to.

Go ahead and spend 40 hrs. a week researching the internet, medical libraries, and talking to doctors--you'll find very little PTS support.

I have been working hard on this. It's not easy.

I am spreading the word about what has worked with me and that there is hope. If you don't have PTS, you will not have the same understanding I do.

This dialogue is overall becoming bit strange. To extract the main essence of these, then Flapdragon describes what she has done to improve symptoms. The intention is genuine and is meant to help people that have DVT/PTS. On the other hand, and I think what is frustrating others members of this forum, then it is written like a sales person selling the "universal truth to cure DVT". In the end of the day, I think the conflicts regarding this thread is how the original message was worded.

I consider that I have done fair amount of research on DVT matters. While I have PhD in marine biology, then I do not have any medical background what so ever, which had made the reading the peer-revewed literature quite challenging. On the other hand, I was approached by a cardiologist other day that asked me for a litertature on DVT matters.

Flapdragon describes the approach to decrease DVT/PTS symptoms, which involves exercise and healthy diet. On the other hand the most important factor to take into account in the DVT recovery is TIME. Basically, generally generally the veins recanalise over time and generally the patient feels better. The question is therefore, would recovery be faster for those doing exercise or not or those following the right diet. A patient that may start exercising after the DVT may think that the excersise cure the DVT. Is that so? Some carefully formulated studies have consluded that exercise does decrease DVT and PTS symptoms in variety of ways DVT or PTS symptoms. Diet can change the property of the blood itself. But does it stimulate breakdown of clots or directly reduce DVT/PTS symptoms? I do not think that has been shown, or is actually the case. On the other hands, changing diet and perhaps eating herbs will not do any harm and may be useful for the general well being, but will not directly improve DVT/PTS sympotms. Medical adive is based on carefully executed studies based on alrge number of patients where the effects of confounding variables (e.g. degree of exercise) is taken into account.

I think it is important to realise that the DVT/PE/PTS consequences are so variable, and the causes of these are so variable, that there is no single pathway of recovery. There is no single pathway in the DVT/PE/PTS recovery.

In the end, Flapdragon is describing what she has done to reduce her symptoms and to provide hope to other people. I guess if the message would have been toned down a bit, and not worde like that the "universal cure" has been found, then it would have not caused these responses.

This is turning into an online pissing contest. I have had PTS for two years now and I have some pretty debilitating days. I'm not going to sugar coat anything. The literature I've read states that 40-50 percent of all people who have had a proximal DVT will develop some sort of PTS like symptoms within five years after having a DVT. Those are pretty much the numbers that are thrown out there. The problem is that no one tracks these patients over a lifetime. Some people can develop PTS many years after their initial DVT. If new members are scared by those numbers, they are not facing reality.

Being positive is all fine and dandy, but you have to live in reality as well. Some of us have a much harder recovery than others. It's all a coin toss as to who gets PTS and who does not get PTS. It's a coin toss as to how severe one person's PTS is compared to another persons. The only reality we have is the statistics. Anything beyond that is just conjecture. I don't see how posting the statistics is fear-mongering. I personally want to know everything I'm up against with this disease. I don't want it to pull any surprises on me in the future. I don't see any problems with this post other than time itself can make the symptoms of PTS diminish as opposed to simply changing ones diet. Like I said earlier, it's all just a coin toss.

Here are some statistics I just found. It appears that 60 percent of people who have had DVT will develop PTS.

Post Thrombotic Syndrome (PTS)/ Post Phlebitic Syndrome (PPS)

Post Thrombotic Syndrome (PTS)/ Post Phlebitic Syndrome (PPS) is defined as a syndrome of chronic venous insufficiency (CVI, a medical condition where the veins cannot pump enough oxygen-depleted blood back to the heart). PTS/PPS is caused by damage to the vein walls and valves following a DVT or thrombosis. As a result of incompetent valves and/or persistent venous obstruction from the thrombus, pressure increases in the veins and capillaries causing pain, swelling and redness of the lower leg.
Post Thrombotic Syndrome/ Post Phlebitic Syndrome Prevalence

Post Thrombotic Syndrome (PTS)/ Post Phlebitic Syndrome (PPS) is the most frequent complication of DVT. Statistics reveal that up to 60% of patients who have suffered from Deep Vein Thrombosis will develop PTS. The prevalence of venous ulceration (a shallow wound that develops on the lower leg due to the increase in pressure resulting from the damaged leg veins failing to return blood back to the heart) is at least 300 per 100,000 or 25% of people develop a venous wound following a DVT.