The study obiviously changes what physicians thought was the best preventative for PTS.

For most cases, by the time most patient was suggested to wear compression stockings they already had PTS. Compression stockings at that point merely alleviates the problems associated with poor circulation by helping to minimize swelling and helping with blood flow, so to that extend I think they should still be recommended and prescribed to patients. Is it going to help every patient control the problems of PTS, no, but for a majority of patients it does provide some relief.

Thanks for your input Tom. I agree. Personally, I couldn't live without them but my docs didn't prescribe them until 5 months after the DVT. It was very apparent in my case I would have benefited from them early on. I was diagnosed with PTS at 2 months out but my case was not the norm. A second opinion with a vascular doc, one and a half years after the DVT, said the only thing that might have prevented all the valve damage would have been to have a clot busting procedure at the time of diagnosis. Looking back, I wish I went to the larger medical center right away. Who knows, I'm lucky to still have my leg despite the limitations and complications.

There are a lot of things about PTS which are mysterious. For instance, many doctors and even the information available on the web says that it's only after 6-24 months that PTS starts to show up. But I do not understand it. This occurs when the body is recovering from the clot. So whatever valve/vein damage must happen when the recovery is still in progress and the clot is significantly obstructing the blood flow. I had a scan at about 4.5 months after my DVT diagnosis.. it said that my veins had no clots and they did not mention anything about scarred veins or veins narrowing or valvular damage. But I am experiencing discomfort nevertheless and if my veins have completely recovered why is this happening? Sure my skin is not discoloured or swollen like it was at the time of DVT diagnosis but the pain, heaviness, tingling ocur occasionally and are disturbing my sleep also :( At that time I had no idea about PTS otherwise I could have asked many more questions to the one who did my ultrasound.

And also most of the times and even in this study only patients with Proximal DVT are taken into consideration and a research done on them. What about patients with multiple distal DVTs? I hope some thought will be put into that also.

Now whether the stockings help in preventing PTS or not, they do help people who had DVTs and they really help in reducing swelling and discomfort in the leg.. this is my first hand experience. A lot of people are not recommended stockings during the early stage of their recovery process but articles on clotconnect and stoptheclot suggest they have to be worn as soon as the oral blood thinners start showing their effect.

I think more and more proactive research should be done in preventing PTS.

san4555,

To some degree they base it on the time frame that they feel the body needs to resolve the clot by naturally producing Urokinase which dissolves the clot (to some degree). Whatever is not dissolved becomes a permanent fibrinous scar that remains in the vein and obstruct blood clot.

Here some information we did at Clot Connect on the topic:

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

Of course that article has not been re-written since the SOX study.

R/Tom

@san4555

You said:
"it said that my veins had no clots and they did not mention anything about scarred veins or veins narrowing or valvular damage. But I am experiencing discomfort nevertheless and if my veins have completely recovered why is this happening?"

I just wanted to say that not all damage caused by the clots will be visible in an ultrasound. Your veins might look fine and maybe blood is back to flowing normally, but the tissues around your veins also suffered while the clot was there and they might still be healing.

The clot obstructs blood flow, meaning that some tissues will be starved of oxygen and blood (if the clot blocks them getting there) while others will be absolutely flooded with it (cause that blood has to go somewhere). Rebuilding/healing that damaged tissue can take the body quite a while and can result in the symptoms you describe (pain, tingling, heaviness, etc.). Of course, damaged tissue won't be visible on an ultrasound.

There's a common belief that if the clot is gone, then we should be feeling 100% again. That's really not the case. Clots tax the body is many ways and can leave damaged tissue behind them that really takes a while to heal. I had a doctor compare it to getting cut with a knife...most of the healing happens after the knife (clot) is gone.

I know that PTS is sometimes diagnosed early in recovery and I'm always a little skeptical about that. I had acute aches, pains, and etc. up until about two years after diagnosis, but all of that has resolved itself for me now. I don't have any issues and I also don't have PTS. From my POV, the fact that you still have aches, pains, etc. at 4.5 months out (even with the clot gone) just means that you're healing. Be patient and I'd bet that a lot of that will continue to improve.

I'll also note that I still have both of my DVTs still in my leg, yet I don't suffer with any problems at this point, other than the leg being a little larger than the other one.

Aches and pains even after the clots are gone doesn't necessarily mean PTS. It could really just mean that your body is still working on healing all the damage the clot left behind.

I've seen this report a while ago when I was researching PTS online. It seems to be the largest and most well designed clinical trial on compression stocking so far. However, I did remember that it says in the end of the report that the usefulness of stocking in alleviating PTS discomfort needs to be further investigated.

I posted a topic about 5 days ago asking others how useful they feel the stocking is. I was ready to leave for my trip to the Caribbean's at that time. I tried leave the stocking off when I was on the beach one day. Based on my experience, the stocking do help with the blood circulation. My lower left leg has always been slightly larger and tighter than my right even before the DVT. But the stocking makes it smaller than the right at the end of the day. Once I take the stocking off, my left leg goes back to be slightly larger than my right. I don't feel any tightness or discomfort. But the fact the the stocking makes my DVT leg smaller shows that it obviously helps with fluid buildup in lower leg. However, it doesn't seem to help reduce the size of my thigh... I am guessing that it can't do much with the amount of fat and muscle on one's thigh. My doctor actually mentioned that I am ok with a knee high even if my DVT is in my proximal thigh.

Oh, also, does anyone know anything about the vitale and Gingsberg criteria? How come the percentage of PTS is so different using these two different criteria?

The Ginsberg scale uses two criteria for the diagnosis of PTS including (1) pain and swelling present for more than 1 month in duration and occurring more than 6 months after acute DVT; and (2) objective evidence on venous Doppler of valvular incompetence. If both criteria are present, the diagnosis of PTS is made.

The Villalta scale uses a combination of five symptoms (pain, cramps, heaviness, pruritis, paresthesia) and six signs (edema, skin induration, hyperpigmentation, venous ectasia, redness, pain with calf compression). These signs and symptoms are then numerically graded to establish a score to determine a diagnosis of PTS.

Interesting thread.

What I was told is that paint that occurs even at 6 months is not PTS, it can also be collateral vein growth. This occurred for me with both clots, though more with the first than the second, right around 6 months, and was the worst pain from the clot...

Though I later developed PTS and did not wear compression stockings except for sports or air flight or other situations where I might have to sit down for long periods of time.

Anything less than a full leg stocking is very uncomfortable for me, and I never understood the point. Wearing normal socks is very uncomfortable for me unless I cut off the elastic band at the top of the sock, which I always do.

@Catalyzt
When you say that you later developed PTS, how did that happen? Did you feel that your symptom got worse? don't quite understand that people could develop PTS after they are fine and feeling normal again. Because the doctor always say that all the damage is done when you have the clot. THen how could people suddenly develop PTS long after the clotting episode?

What Cat is describing is not unusual for people who are diagnosed with PTS.

There's vein damage from your DVT, which can cause higher blood pressure in the vein . All that pressure can damage the valves which then impedes blood flow. If you have poor blood flow as a result, that can lead to the PTS symptoms. That can happen over time, which is why it's a long term complication of the DVT and symptoms can occur up to 2 years post DVT diagnosis.

I had the normal occasional swelling and some pain after my DVT for a few months, but in general things looked and felt good. Then at 18 months, my leg, from knee to foot got bright red and it was swelling like crazy. I actually thought I had another DVT so they ruled that out before diagnosing me with PTS.

@Catalyzt
I also cut the elastic on my regular socks since I had the DVTs due to the swelling. They are very constricting. I wear knee high compression because the calf is where I have the biggest problem with swelling and pain. There are more valves in the distal leg and the blood has farther to travel back to the heart so it makes sense for me.

This is an interesting thread. Everyone's experience can be very different with clots, residual damage and the development of PTS.

What I find interesting is docs use the terms PTS and chronic venous insufficiency interchangeably but they are not necessarily the same thing. Whereas PTS includes pain, swelling, discoloration, ulcers, valve incompetence, etc CVI is more specific to valve incompetence but can produce the same PTS type symptoms. CVI can result from varicose veins and a number of other conditions/risk factors. They say CVI resulting from a DVT is PTS. You can probably have PTS without CVI. I think my doctor was referring to CVI when he diagnosed me at 2 months. The symptoms were obvious in that the valves weren't working and they don't repair themselves plus reflux can be seen on an ultrasound.

So what I probably had at 2 months was pain from the DVTs, pain from collateral vein growth and the worst pain was from the valve damage. PTS set in at some point but hard to pinpoint when because I had those symptoms all along, it's now been 4 years.

I think the stockings are helpful in alleviating symptoms to some degree for most people. What the study was trying to investigate was whether they prevent the development of PTS long term.

The ATTRACT study is trying to determine the same outcome. Whether early intervention with clot busting treatment, in proximal DVTs, can prevent PTS.

@TossNTurn,
It's good to know that your body has healed and your symptoms have subsided over time. I hope my body also works around this problem and be back to normal. And that explanation about damaged tissue is brilliant. No internet article about PTS gave me that info thus far. Thanks :)

And it's been close to a year now since I was diagnosed with DVT. The next time I go for an ultrasound I am going to ask the doctor a lot of questions. This is a very informative thread :)

Good question, Ava.

First of all, I never did feel "normal" again-- I felt better, sure. There were days when I completely forgot that I had a blood clot...

And I still have those days! I would say for both clots, pain was worst at about six months, when it was virtually constant, and then got better and reached a plateau at 10-15 months. For example, 11 months after my last clot I still got some bad leg cramps at night... but by 13 months, those stopped.

The PTS is a slower, more insidious process, I think. I was diagnosed about two years after the first clot, well before the second one. For example, I notice that my foot is generally more swollen than it used to be. There were shoes I could wear for 10 hours after the first clot that I can only wear for five hours now. Also, the skin around my ankle is a dark, mottled purple with broken blood vessels, and there are more prominent bulges in my external veins. And I'm starting to get minor skin rashes, too, on the bad leg. I really stay on top of that with Vitamin D ointment and steroid cream, and fortunately, that doesn't last more than a few days.

I am aware that these symptoms will probably get worse-- but very slowly if I keep getting good exercise, don't smoke, and stay on Coumadin. I expect I've got another few seasons of skiing and biking left, and I could probably bodyboard for another five or ten years (I may stop sooner because of water pollution, Fukushima contamination, etc., before the clot stops me! Mexico, here we come!)

So maybe I'll have to stop those sports a few years earlier than I would have due to normal aging. I still figure I'm getting off easy.

--MJJ