I think it depends on how you define improvement. I mean there are people who don't have chronic clots who have ongoing serious pain and swelling. And so regardless what the ultrasound shows, if you are managing well and able to work, be active etc, that's a win.

I do know some people here who have chronic clots and have had improvement in how they feel. Can't say if they had improvement with the actual ultrasound results though.

jbmc, you live in Baltimore, which means your are about 90 minutes from Dr. Marc Garcia. I was in a similar situation to you and I went to Dr. Garcia and he removed my chronic clots. I also wasn't in a lot of pain, but I did have swelling and my leg would get very tired. My leg and life has been much improved since then. As long as I don't sit too much my leg is normal. I do wear a compression stocking - but it is only knee high and only 20/30. My chronic clots went all the way to my iliac. BlackMamba has also had the same procedure done by Dr. Garcia (he flew in from Idaho) and from what he has indicated in a few posts since the procedure he has also seen significant improvement. It might be worth your time to make an appointment with Dr. Garcia. Your vascular surgeon and other doctors may tell you nothing more can be done, mine did, and I only live 45 minutes away. Not listening to my vascular surgeon and making the effort to go see Dr. Garcia on my own and not just living with my chronic clots was one of the best decisions I have ever made.

I was still all clotted up at my six month Doppler scan. I had significant improvement in clot burden, but I still had a lot of residual thrombus. On the 15 month Doppler scan I only had residual thrombus in two veins and my Popliteal vein. Fast forward to three months ago on my 2 year Doppler scan, I have no residual thrombus, but I do have narrowing and inflammation of the Popliteal vein. My symptoms have not improved, nor have they gotten any worse - even with the clots completely dissolving. I think it's too soon to tell whether or not your clot will or will not be completely dissolved. I think you still have time for improvement. But if you're not in pain, and your quality of life isn't affected that much, I think your prognosis for the future is good. Hang in there! Things do get better in time!

Thank you for responses. Aicir, you and Mamba have always provided positive comments regarding the procedures with Dr. Garcia. And other folks have posted some valid points about not taking risks (procedure) if you don't need too. I would hate to make my situation worse if things were to go poorly with an operation. I am really not in any pain, and have minimal swelling.
But that is the reason for my post. Knowing that there is the ability to remove older clot with doctors like Garcia, do I continue to see if I have a chance of my clots improving beyond the 6 months while on Xarelto wearing my stockings and ready wraps? Or could I avoid some future difficult PTS symptoms by being more aggressive?

Thanks Jeremy. I have followed your progress and you have always been helpful, as most are here. Tomorrow is the hematologist, so I want to know his thought on healing beyond standard treatment too.

Wanted to chime in on this. My first DVT was in 2005 and it was good sized and all repeat ultrasounds that I had showed that it was still there. Even four years later when I had my second DVT, the first one was still in the vein.

However, I was like you in that my only issue was some swelling. In fact, that leg is still an extra inch around than the other one, but that is the only issue. I don't get extra swelling when I'm active, no discoloration, no pain, no PTS. And that's without wearing compression stockings past the first month or so.

Also, I had another ultrasound earlier this year (nine years after that first clot) and, with the exception of some scarring, the original clot was gone. I was quite shocked, as I figured if it was there at the four year mark, it would probably just stay there. But, no, it has pretty much disappeared completely. Something I admit I was not expecting.

I'll also say that I think your doctor is a little short-sighted thinking you'll have no more improvement past the six month mark. I had substantial improvement between six months and two years with my first DVT. I definitely didn't even feel like I was completely recovered until about the two year mark. So, from my perspective, I think you could definitely see more improvement over time. I wouldn't be convinced that this is as good as it'll get.

So, I suppose I'm politely disagreeing with your doctor. Based on my own experience, I would expect you could continue to improve and it is totally possible that the clot might eventually disappear.

Hang in there and ask lots of questions and keep an open mind. Just because the doctor says something, it doesn't mean that's how it'll actually play out.

Thanks TNT, I remembered you had late success. Did you remain on blood thinners the whole time your first clot healed?

One thing for me, and I know that this is just me, but I would question a surgeon very persistently about the medical necessity of that kind of surgery, particularly when not having any real quality of life issues (minimal pain and swelling). I'd also ask for specific outcomes, for him to show you the studies that demonstrate that procedure will prevent PTS. I think far too many surgeons want to cut, period. Because that's what they are trained to do. So I'd get a few opinions from different surgeons on that. I know that sounds cynical, but you really have to just make sure that your outcome expectations can be met by whatever procedure is performed.

@jbmc777

I was only on anticoagulants for the first six months after my first DVT. The second DVT showed up four years later, six weeks after I started taking a new type of birth control pill. Not the best idea!

Like I said in my original post, it took two complete years for my clots to completely dissolve. I think you still have a lot of time for improvement. I wouldn't look into surgical options unless you have really bad pain and swelling. I have a lot of pain for some reason and continued mobility issues, but no swelling. I went out to a few stores yesterday and walked very fast. Now I'm in a lot of pain. My calf feels like something is ripping it up. I'm not sure why I still have all this pain after physical exertion. It just goes to show that we are all different. We also heal in different time frames and at different levels. If you are without significant pain and swelling right now, I don't think your situation is going to get worse. A lot of studies show that if it has been at least six months, and up to two years and your symptoms remain the same, you are not likely to get any worse. I think your going to be fine.

I guess I will add my 2 cents. After my first DVT I had some residual thrombus which didn't really cause me any trouble. It did take about a year before I could go days without any pain. I quit taking Coumadin at about 9 months and pretty much resumed my life as it was before the DVT. I played in multiple basketball leagues, coached my sons teams and traveled a lot for work. It wasn't until my 2nd DVT, 7 years after the first, that I developed PTS and spun downward into my well chronicled misery. I would not have traveled across the country and taken on the considerable cost of having surgery with Dr Garcia unless it was the last resort. My desperation brought me to the point I was willing to take on the risk and the cost because the alternative of living the way I had been was not acceptable. If things has went the same as after my 1st DVT then no matter what the tests said, I would not have had the surgery. Just my thoughts on the matter.

Mamba out

jmbc, unfortunately there is no crystal ball that we DVT patients can look into to tell us what is going to happen with our legs in regards to PTS. It would make the decision of what to do much easier if there was. I have a science background so I'm a strong believer in science and the statistics it can produce from valid studies. The reason your vascular surgeon told you to live with your PTS the way it is now and get used to it, is because statistically you won't improve much. It doesn't mean you won't so you shouldn't give up hope, but if you throw in everyone that has had a DVT at about the 6 month mark not a lot of improvement is seen. And I know everyone does not fit into the average and what is expected. I certainly didn't. With a completely occluded iliac I should have been in debilitating pain and I wasn't. Considering the seriousness of my DVTs I should probably have some varicose veins on my legs too and I don't. My issue was slight swelling and a leg that tired easily. Seems like that could be easy enough to live with.

So the question would of course be, why did I go see Dr. Garcia and have my chronic clots worked on? It was because of the statistics of what I most likely would be facing in 10 years or less. Statistically, I was most likely facing debilitating PTS that would not allow me to do the job I have now or live my personal life the way I wanted to. And I didn't wait to see if my leg would develop debilitating PTS because the sooner a clot is out, the less damage and the better the results. So that is why I didn't take the wait and see approach. For me it was all about the statistics and none of my doctors could tell me it wasn't going to get worse. It seems they don't have a crystal ball either.

Could I have been accepting of the way my leg was before the procedure. Yes, and I was. I was lucky to be alive because of the HIT I developed as the result of the heparin. I was a walking miracle. Not only did I live through HIT when they didn't think I would, I could have walked out of the hospital on my own if they let me. I think at one point I even posted that it wasn't so bad because I would still be able to travel. I could still go to Europe and stroll the streets of Paris and London. And I could even be OK with never climbing to the top of Notre Dame or St. Paul's. But in the back of my mind was the "what if." What if I didn't have to be accepting of how my leg was? What if I could climb the 500 plus steps again and reach the top of St. Paul's again?

So I started searching for doctors that were not accepting of the toll PTS can take on a person's life. Doctors that were asking the same question I was silently asking myself. What if they could actually safely improve the lives of people living with PTS due to Chronic Clots? What if all those doctors that were telling me to be accepting and live with it where wrong? I found just a few of these medical pioneers and they all seemed to be interventional radiologists. Doctors that through their careers had seen the suffering and pain and lifestyle changes that PTS can bring to a patient's life. Doctors that were not willing to accept the status quo. And I was lucky because I live 45 minutes away from one of those pioneers.

So for me it was about the statistics. I was likely to get worse and not better, and due to my current health I was statistically unlikely to have an adverse reaction due to the procedure. And could my situation be made worse? Statistically, it was not likely. Dr. Garcia had presented the results on the first 100 or so patients he had done the procedure on, and while most showed significant improvement there were a few that showed minimal improvement and a few didn't show any improvement, but they were no worse off either. And as I have mentioned before, I have good insurance and Christiana is part of my PPO so I didn't have to pay for anything. I realize that made my decision to have the procedure easier than if I had to pay for it.

There was something else that caused me to pursue looking into the procedure that had nothing to do with statistics. What if I looked back and wondered if I should have at least made an appointment with a doctor that was actually doing the procedure? I didn't want to live with that regret. This procedure is still so new that most doctors are not even familiar with it (or familiar enough with it) that I think they can't even give patient' an accurate opinion if the procedure can make a positive difference in a thier life. If you say EKOS at them they haven't even heard of it let alone the possibility of removing chronic clots with it.

I would agree with what rmb said. You really do need to question any surgeon about the outcome of any surgery. And I would run fast and far from any doctor that says they can make your leg all better and completely back to normal. I was never promised that my leg would be normal, I was never promised that I would have improvement, I was told if my vein could be opened back up and it can be kept open that I should show improvement. And as many of us have discovered all doctors are not created equal so you want to make sure if you did decide to do surgery that the doctor knows what they are doing.

I don't really know if you should have the procedure. My suggestion is if you are not happy with how things are going or waiting to see if your leg will improve that there are options available. For me it has been life changing. I have spent my Spring and Summer often times forgetting I have a 'bad" leg. Much of my free time has been spent doing gardening - and not the easy kind of gardening. I'm talking about re-digging out flower beds, spreading mulch, pulling weeds and staining decks. I couldn't do much the previous two years because my leg would tire out after on a little bit so I have been playing catchup all year.

I know what I recommend is different than what most everyone else is saying, but that is because I took a different path. It doesn't mean I don't have great respect for what everyone else is saying. During some of my lowest moments I would come onto this board and read what rmb, TossNTurn, ShilosMommy, luckymommy, dero, RetiredNavy and others had written and it gave me the hope and strength to believe I was going to win the battle over the DVT. That I was not going to be defeated by it. I just choose to wage my war differently.

Sorry this post is so long. I wanted to try and explain my thought process on how I decided to do what I did.

Thanks again for the informative replies. All of your input helps in making up my own course of direction for my personal recovery plan.

My Hematologist and I had a fantastic hour long chat yesterday that was very productive. He reminded me I switched to Xarelto in March after 2 months of Warfarin. He thinks I really could be only on my 4th month of real recovery since my INR was so low on Warfarin and inconsistent. Like many of you commented, it is early, even if it is 6 months and not 4. He tends to think I will see improvement over time, but knowing if I am a lifer on Xarelto will be tough to call.

At the moment, the plan tomorrow is to test my Vitamin B and Folic Acid levels, along with my homocysteine level(I'm compound heterozygenous for two MTHFR mutations which can elevate homocysteine). If homocysteine remains mildy elevated with normal B and Foic levels, we stay the course, and maybe I can come off Xarelto to test for other potential clotting disorders at end of year. Right now, he thinks I have too much clot and there is no reason to risk another clot coming off Xarelto to test right now, so be patient. If Homocysteine is much higher, with no reduction in B and folic, we up the Xarelto dosage.

In regards to the surgical procedures, he thinks it is too early to decide. He points out I'm young and healthy so I may see more improvement. and also I am not hindered by my residual clot really in any way. So far ;).
So be patient and let my body and compression fight harder for a while.
He really wants to review my tests and make sure the ankle surgery was the trauma that created the clot, and not another cause we are missing.

My clot leg calf hurts tonight, my headaches are back, but I feel much better thanks to all of your support and having an amazing hematologist.

jbmc I'm sorry your leg is acting up. I hope it has settled back down this morning.

I have a great hematologist that always makes me feel better too. I had a hematologist visit me at Christiana this week too that made me feel better too. Sometimes I think they are so good dealing with patients because they see so many people with cancer -- they know how to deal with scared and worried people.

I made the exact same descion as you did yesterday at 6 months. So I do understand why you made it. And as I mentioned in another post yesterday it worked out fine for my right leg. While I still have chronic clots in that leg I would never know it.

Just an update. I had a Doppler yesterday that showed I still had sizeable residual clot in right leg popliteal and femoral, but blood flow looked strong, and it looks like they are dissolving still. This is now 8 1/2 months in. So it's good news. The reason for the scan is I have to have a Right Heart Cath becasue I have high systolic pressure in my pulmonary artery (47) and a mildly dialated right ventricle. So I need to come off Xarelto for the procedure, and we wanted to make sure clots were still improving. I'm hoping the heart Cath shows my pressures are improving too. Pulmonary Hypertension is the concern.

I went back and read the thread again. One question I still have is: Has anyone gone off blood thinners with resisdual clot? I know that question is very broad given we all had different circumstances. But if you had zero clotting factors and accute EXTENSIVE clots, did you come off the thinners eventually while chronic clot remained? Is Chronic clot a risk factor alone that wold require thinners for life? I have no filter, and did have a Massive PE. Thanks for sharing.