Chrissie,
Thanks for the post. I think a ton of us feel what you felt about post-DVT recovery and all experience the LONG road to recovery for that ailment.
I myself started a paleo diet about two months ago and I hope that bybeating the wheat, it will help some of my aches and pains. Working out on the elliptical and bike 5-6 days per week. Nothing is better than jogging, but these days, my knee is NOT happy when I do that, and puts me down for two weeks afterwards. I want to get my heart pumping for 30 minutes a day minimum though.
Keep active and good luck with the diet.
:)

Thanks for posting this heartening news and advice,a nf congratulations on your healing process. It takes persistence and faith in the body's own intelligence. I can confirm that whole foods based diet is key to any and all healing. They're finding that diets with too much sugar (eg anything processed these days) contributes greatly toward inflammation in the body, so with something like PTD it stands to reason that there might be a link between cutting out most sugary and processed foods and improvement. I say that without being a doctor of course! Anyway, thanks for the tips.

To follow up on what I said about inflammation and diet, here's something from a credible medical source on that issue: http://www.health.harvard.edu/fhg/updates/What-you-eat-can-fuel-or-cool-inflammation-a-key-driver-of-heart-disease-diabetes-and-other-chronic-conditions.shtml

Honestly, most people heal from a DVT. There is a subset of us that don't , who experience severe PTS or other issues down the road but most people recover completely.

I'm not trying to poopoo the discussion. I have an inflammatory disease so I understand the connection to inflammation and sugar and the effective inflammation has in our bodies. I do believe that being active as soon as possible after diagnosis is really important to DVT recovery. And sure a healthy diet is beneficial to anyone's overall health and well being. But regardless, most people do ok after the DVT, and those that don't, it's not necessarily because they're unhealthy or not eating right.

Bit of another perspective

The body has "use it or lose it" response to most stimuli/stressors. As an example, if you do strenght training, you get bigger muscle mass, and if you use your brain a lot, you can slow down dementia and same happens with the circulatory system. If you excercise a lot, and some tissue needs blood, the body will do everything it can to transport from and to that tissue, whether it is with bypass or new vessels. However, there is no evolutionary incentive to actually repair damaged veins. Damaged vein valve stays damaged forwerver, and so will scarred veins. The reason is I guess that DVT is basically so rare in nature, so there is no evolutionary driven response to deal with it. If you were an animal and had to stay immobile for so long time, it will never get a DVT as it would be eaten by the next predator. (Naturally , mutations that promote clotting naturally exists among animals but are rare) . The exception is ofcourse bears and squirrels that hibernate, but they have special and very clever system that prevents the blood during clotting during hibernation.

In other words. Excercise has been shown to be good in recovery of DVT and PTS symptoms. It will reduce the symptoms and improve general well being. It may promote formation of "bybasses" in both veins and arteries and thus go around residual clots, presumably, as by excercising you are producing more pressure in the system, and thus the body responds accordingly to get the blood to go to right places. Excercise will not however repair damaged valves or scarred vein or remove a residual clot that has been adhered to the vein wall for several years. In other words, if you have very damaged valve veins causing you lots of PTS problems, excercise will not cure your PTS problems as the valve vein damage is irreversible, but it will may decrease your symptoms, perhaps a lot or perhaps little. This is impossible to predict.

On the other hand, it may well be that excercise may be more important in DVT/PTS recovery than currently thought , and hopefully future studies will demonstrate that. As an example, previously it was though that people with DVT should hang at home with the leg up and move very little, until this was disproved.

P.S. you know naturally that diet "rich in veggies" will thicken your blood a bit

Stefano makes good points.

I have PTS. It's not severe, thankfully, and my symptoms are intermittent. I'll go months with hardly any except some swelling and some redness at times, and then other times, it's pretty significant. I think any exercise where you're moving your legs and getting the circulation going is going to help during DVT recovery and going forward. I find exercise helps with my PTS symptoms. Again, I don't have severe PTS. I know there are some folks who have rather significant PTS and so exercise is just painful.

I also want to comment on how doing strength training and cardio can " create a situation in which your body 're-vascularizes.'" Your body will create collateral veins whether or not you're working out and lifting weights. It's natural for that to occur post DVT diagnosis.

I'm glad folks are doing well. Just want to be sure that people are both realistic and hopeful about their outcomes, and that they know eating Captain Crunch every morning for breakfast isn't going to make or break your DVT recovery.

My Doc recommended swimming as the best exercise for DVT rehab and I can definitely say it has helped me a lot

I think someone hates me because my PTS is always flaring. I only have a day here and here when my pain level goes down to a 2, and that is if I rest the leg all day. I've been in some high pain for the past three days because my INR is still low for three weeks now. I notice that my leg pain gets bad when my blood is too thick. I don't talk about this to discourage anyone. I just want you all to know that all of us are different. Some of us have other contributing diseases that make the initial blood clotting event much worse. I used to blame my headaches on the Warfarin. Now I know that my extreme daily headaches come from my Diabetes and high blood sugar. My INR has been under 2.0 for three weeks now and I'm still having a lot of headaches. I don't know if what role my high blood sugar has had in my leg not healing properly, but I can assure you it is probably not making the healing process or my PTS any better. I wish I could go a month or two with little to no symptoms, but I can't. I have moderate to severe leg pain whether I my pain killers or not. Also my veins have re-canalized they are just scarred up and vey small now. But that's just my particular case. There are other posters who are worse than I am, and there are a lot of posters on this forum who have recovered 100 percent. It's all a crap shoot in my opinion.

I meant to say that I have moderate to severe pain in my leg whether I'm on pain killers or not. I just wanted to clarify that because sometimes pain killers can cause rebound pain. I have taken 2 week pain holidays - forced to by my doc, and my pain level was even higher when I was off the pain meds. I do what I have to do to manage my pain on a daily basis. I wish you well though in your recovery. Thanks for the post!

Well done Chrissie, but did you mean Vitamin K RICH foods! Kale, broccoli, and spinach make my DVT sore! It's only been a year, but I try to stay away from Vitamin K rich foods. Just asking!

For those of you who do not want to believe that you have the ability to create the circumstances for your body to heal, you are welcome to believe that.

For those who want to know about how to heal, I can only share my experience. Everyone's experience will be different, but I am here to say you CAN heal.

The majority of the info on the net about PTS is negative. I also received info from a vein specialist in Colorado that my leg would never heal.

My point is that you CAN heal. I am doing it. I am not doing it through negative thinking or crap eating. Yes, I DO eat vitamin K rich foods. I have been off warfarin for 3 1/2 years. I do not suggest extreme diet changes to people who are currently on warfarin, but I do think people on warfarin should consult their doctor about eating a lot of vitamin K rich foods and adjust their warfarin accordingly. (Meaning, start eating Vit K rich foods and have your doc adjust the warfarin to accommodate these foods.)

Since my last post, in which I say I could do max. 1 hour walking around without a compression stocking, this has improved to 4 hrs.

Someone here mentioned that most people who have PTS heal from it. That is true--for mild cases. For those of us who have had massive clots, the prognosis is grim. I am writing to help people who have had full leg clots like I did.

There is hope, but you have to create the circumstances for your body to heal: exercise, whole foods, positive thinking. You are made to heal.

No, your valves will never heal, but "re-vascularization" will create new routes for the blood to circulate back up to your heart--as it should.

For those of you who think that "re-vacularization" is not a help, well, I think you're wrong. There's also a thing called "neuroplasticity" and it has nothing to do with that silly Luminosity site.

I had a massive brain tumor and some issues from that along with the surprise clot that came after brain surgery. I had to work hard to regain all of my abilities. I was not severely cognitively impaired, but I suffered from lack of concentration, some weird tics where I repeated myself, some stuttering and sometimes saying the wrong word. I have completely repaired this.

I am a translator by profession, and foreign language is known to help with cognitive skills, so I was fortunate I had a brain rebuilder built into my profession, but it was a really hard road in the beginning. I regained all of my skills because I had no choice: I am single and my sole provider. I am also self employed. I had no choice but to rebuild.

SO! If you would like to find points to argue, you are welcome to do that.

My purpose here is to help those who feel there is no chance at healing. I don't care to argue.

For anyone who wants to find a light at the end of the deep tunnel of info that tells you healing is not possible: I am here to tell you healing is possible. It may never be perfect, but you are not doomed to a life of pain and disability. Create the circumstances for healing: whole foods, exercise, positive thinking.

You can do it too! :) Like I said! It has increased to 4 hrs. w/o a stocking in the past few months! It has taken years of slow progress but the progress is increasing more rapidly. I was in extreme pain the first two years--but it's healing. :-D

My clot was from mid-calf to my groin. It still hurts on my worst days--but mildly. On my best days, I walk on it for 4-5 hrs. w/o compression. Most days I can hang around my house without compression. This was impossible up to even 12 months ago.

Argue if you want.

Believe if you will. :-)

No one was arguing with you and I think everyone agreed in this thread your body can / will heal. Also, no one implied re vascularization won't help. If that's your take away from some of the responses, you're misunderstanding or selectively reading.

This is a DISCUSSION thread not a pulpit.

I can only echo the reply from rmb. Reading the previous replies, there was no one arguing with you.

Great to hear about your recovery

Few points, and please note that Im not arguing with you...
1) The science says that excercise is good to reduce PTS symptoms, so keep it up.

2) You are adjusting your warfarin dose with you high K-vitamin diet,which is also good idea. I have not seen any studies on the effets of diet per se on PTS, but diet rich in vegetables is good for your body (and naturally weight control as well).

3) Revascularization takes mainly place in cases when a vein has a occlusive clots. Such "bypass" formation seems to take place in some patients but others not. There is a limited understanding what really triggers such "bypass" formation. Whether excercise does promote formation of new veins around clots is possible. With excercise, the pressure on the venous system increases and thus it may promote vein formation. I dont know if anyone has investigated this though...

4)It is generally very difficult to predict into the future how the PTS symptoms will be , and there is often no relationship between the degree of clotting and PTS symptoms. Also the recovery is highly variable. My DVT was from ankle to 1/3 up my thigh. Now two years later, I can be without compression stocking for several hours, i.e. my PTS symptoms are mild. Will my PTS symptoms decrease further in the next 2 years? This will be impossible to predict. In the last ultrasound I still have a residual clot in the femoral vein. It is difficult to say whether it affects the flow rates (not undergone a Venogram), but the degree of residual clotting can influence PTS symptoms. Will it eventually disappear or stay there forever? Again, impossible to know, although it will be most likely that the clot will stay there forever and be part of the vein. However, if it will not affect the blood flow, it does not really matter.

5) I agree that it is important to stay positive. Unfortunately the breakdown of clots takes long time, but eventually things will improve,like you describe...

To RMB and Stefano:

Great! No one is arguing with me. Agreed. I won't argue with that.

My purpose here is to help people who have been given a long-term prognosis of pain and non-healing. Everything else is secondary.

I can still google about blood clots and come up with nearly nothing that is positive about healing from a blood clot.

Again, my purpose here is to let people know healing is possible. Especially for people who have had proximal DVTs.

Distal DVTs can heal and return to normal fairly easily. For those of us who have had proximal DVTs that compromise an entire limb (or even an entire limb + abdomen), the chances of healing are less than those who had distal DVTs.

My leg is healing. It is taking a LONG time, but it is healing. My goal here is to post something positive about healing from a massive proximal DVT.

I'm doing it--and I want to share my experience with others.

Distal DVTs less commonly have PTS as a repercussion. Proximal DVTs more commonly have PTS as an aftermath.

Here, I am speaking more to people who have had proximal DVTs.
We're the ones likely to have PTS, which can cause lifelong pain and other medical issues.

I'm healing from a proximal DVT and sharing my experience.

I hope to help others with proximal DVT and the resultant PTS.

As someone who's been recently diagnosed with similar clotting I for one appreciate hearing of your positive outcome. The future is uncertain and scary but hearing from someone who's gone through it and getting on well is quite the comfort. So is hearing about what you've done to get there. Thank you.