Hi chipsanddip
Thanks a lot for your positive feedback

It just crossed my mind that there is one option yet to deal with this occluded clot and this is with angioplasty and stenting procedures. During angioplasty, the vein is "ballooned" out but the stent is a metal mesh tube that keeps the vein open. This procedure is often done for ilio-femoral vein (around groin and hips) or higher up, but whether it can be done for the "superficial" femoral vein, is something that Im not s sure about.
http://www.uofmmedicalcenter.org/healthlibrary/Article/85547
http://evtoday.com/2013/07/venous-stenting-expectations-and-reservations/

Recently, there have been some trials of using combination of stenting and catheter directed thrombolysis (EKOS is cathether directed thrombolysis but without stenting).
http://www.ncbi.nlm.nih.gov/pubmed/24477468

Here is a revew paper on the various endovascular treatments. (endovascular means operationso of veins)
http://www.ncbi.nlm.nih.gov/pubmed/19641957

Angioplasty and stenting procedures are really commonly used to widen up clogged arteries in people with heart diseases. It could be thus easier to find some vasular surgeon that can do angioplasty/stenting than e.g direct removal of clots and catheter directed thrombolysis as EKOS (but the latter works best if the clots are new).

I can send you the pdf of some references if you supply me with a E-mail address.

I have been thinking about ultrasound report and do not fully understand all parts of this sentence: "There is absence of flow, compression and augmentation in the left mid superficial femoral vein which is diffusely small, decreased in diameter compared to the exam from 11/29/2014, likely chronic. "

What I understand is 1) there is no flow in the middle part of SF in the left leg and this is where the clot is 2) the vein cannot be compressed. Healthy veins are easily elastic, and thus when the sonographer presses the ultrasound probe, if it can be compressed, it has not clots. If it has clots it cannot be compressed 3) the clot is likely to be chonic (limited or no decrease in clot size to be expected in the future, although this is impossible to predict) and 4) doppler shows no new clots

The rest of the sentence I do not understand.
1) "which is diffusely small, " I have no idea what they mean here. Please ask your doctor about this.
2) "decreased in diameter". Im not sure wehther they are referring to the diameter of the vein or something else? If the SF vein has become narower where it is occluded, then that is not a good sign. Sometimes when the veinis occluded, the body makes new veins (or bypass) wich direct the blood around the occluded part of the vein.

Considering that you have your DVT in your left leg, you may ask your doctor about whether it would be a good idea to rule out May Thurner syndrome. While rare, it affects mainly younger women, is nearly always in the left leg (is caused by the compression by the iliac artery) and does generally not cause symptoms unless it is triggered by other causes (e.g. immobility after surgery, treatment with hormones and other illnesses that can cause clots ( I saw that you have POTS that can increase the risk of DVT). To detect MTS, venogram and/or endovenous ultrasound would be best, but it is difficult to dagnose. Again, this is rare, but perhaps worthwhile to ask your doctor nevertheless about this.

In terms of doctors, I would recommend to find a vascular surgeon and/or interventional radiolgist. Haematologist would tell you all about the porperties of your blood and anticoagulation treatment. Vascular surgeon/interventional radiolgist could provide some good advice with respect to treatments to increase the flow through the vein, i.e if it is considered advisable.

With respect to costs is something that I have no idea about, but Im from Europe where health is either cheap or free. My advice is to stay on anticoagulant treatment as long as the SF vein is occluded. The thing is as this vein is occluded, all the blood needs to be transported up the leg via all the small veins (both deep and superficial) in the thigh , and this can really slow down the overall blood flow up the leg and thus increase the risk of clotting. You need thus anticoagulants to change the properties of the blood so it is less likely to clot when the flow is so sluggish.

Good luck and keep posting if you have more questions.....

Hi again

Forgot to reply to your message. I have never had clot removal oprtation. I have actually residual clot in the superficial femoral vein (like you) but is just above knee up to 1/3 up the vein, which will robably never disappear. However, I have two SF veins, and the other one is clear.

I do not understand why you have pain flexing your knee. If the popliteal vein has no clots, I wonder if this pain is caused by other problems. Also it is difficult to say much about the pain in the shin.

Reading over the ultrasound report I read this " augmentation in the left mid superficial femoral vein". This presumably means that due to the clot, the vein has gone wider, as would be expected. The "decreased in diameter" could then mean that the overall width of the vein is "decreasing in diameter" which could be due to the fact that the clot is decreasing. This makes the part of the sentence " which is diffusely small" impossible to understand, as it cannot be referring to the blood flow as previously it said that there was no blood flow. ...anyway, you ask your doctor about this.

All the best and again,, I would recommend that you talk to a interventional radiologist and/or vascular surgeon

My opinion only: be very judicious about any vascular surgeon who promises results. Just do your homework, ask a lot of questions, and get a couple of medical opinions on any surgical solution.

Unless my health was compromised or my pain were unbearable, me personally, I'd not let a vascular surgeon perform a procedure on me. But like I said, just my opinion.

I agree that what rmb says is good advice. Procedures for clearing out chronic clots are still far from standard, and the well-respected doctors with whom I've talked do not agree with that type of procedure. I have had catheter-directed thrombolysis in my leg, but it was when my clot was acute. Even at that, I was still left some chronic clotting. There are a couple of people on this site that will sing the praises of this procedure, others who have not had as much success with it. So before getting too attached to any idea of removing the clot, really make sure you talk to doctors you thoroughly trust.

Again, this is just my opinion on the subject, but part of what bugs me about these surgeries is that they promise to clean up chronic clotting, yet still put some stress on 'do this earlier rather than later' to get the best results. Well, if that's the case, then in my opinion there's really no way to know whether the surgery actually did anything or not. DVTs take a stinking long time to heal. So they say the longer you wait the lesser your chances of success, yet when you do it closer to diagnosis, you honestly have no idea how much you're going to get better without surgery. I guess it's just that I don't really see how they can truly claim to do anything your body wouldn't have done anyway. Believe me, having suffered from such severe DVTs myself, I'm excited at the possibility that eventually there could be better treatment for the veins, I just am not so sure we're there yet. Be sure to get some unbiased medical opinions, not just listening to big promises that a particular surgeon makes.

By the way, I also think that if you want better interpretation of your report, have an appointment with your doctor so he can explain it all in terms a person can understand. For instance, "augmentation" is a particular response they look for when testing, it doesn't have anything to do with the size of the vein as compared to normal or anything like that. I do agree that it sounds as though your clots are upper leg, so that's likely why they didn't scan further down, since even at the popliteal level everything looked normal. I am personally not surprised that you have pain around your knee, even with the clots higher in your leg. My clots started in my pelvis, but my first pain was in my calf. I suspected DVT and had an ultrasound, and no clotting was found in my entire leg. Despite the excruciating pain, I was sent home with a "Sorry you're hurting, here's some Percocet.' A week later I was having emergency surgery because my entire leg was clotted and I had PE. What had happened was my clot was only up in my pelvis, too high for the ultrasound to see, when the first scan was done. Obviously, you can have pain in a place where you don't have a clot, just because blood flow is messed up in your leg.

I'm sorry to say I can't personally recommend any doctors down in your direction. I live in a completely different part of Florida, in the northwest. All I can say is try your best to get recommendations from your doctors where you lived before, or from friends you may have living where you do now.

I want to say something about your report: The report is not the only thing that should be considered; it's a tool, but your clinical symptoms are also considered. So reading the report on face value and making a determination off that alone as to what you should or shouldn't be feeling may be shortsighted and may not tell the whole story.

And yeah, the pain you could be feeling around your knee could also be referred pain.

I mean no offense to anyone trying to help you work through your report but lets face it, interpretation of results should be done by a person's physician, likely in conjunction with a physical exam.

I totally agree with rmb and ShilosMommy have said with respect to getting various opinions before undergoing any operation, as I have suggested myself . Few remarks though
1) Im not acting like a doctor here. It is clear that chipsanddip will talk to go over the ultrasound report with a doctor. So does that actually mean that as Im not a doctor, I cannot do my best to clarify the ultrasound report? So where can I provide guidance? So next time someones puts a ultrasound report on this forum and asks for help to clarify it, I will thus say " sorry, not entitled to provide any clarification......"
2) I have never talked to a doctor that promises "success". If I have to undergo a treatment of some kind, they evaluate the pros and cons, the likely outcomes and likely risks. Perhaps the doctors in USA are more commercialised than here in Europe, and thus perhaps act like "car salesmen" and promise "success" in hope for more profit. I have no idea.
3) There are so many types of operations/treatments possible to remove clots. It needs to be stressed that probably all of the treatment options I mentioned have been approved by FDA. Some can only be carried out when the clot is fresh while for others this is less important. I have highlighted four options a) do nothing, and see if the body breaks down the clot (even though it is currently regarded as chronic). Steps can be taken to remove it in the future if necessary. Alternatively, remove the clot or widen the vein and this can be done with b) Direct removal of the clot (with catheter), c) EKOS and d) angioplasty/stenting. There could be other possibilities. Anyway, this can be discussed with the vascular surgeons/interventional radiologists or any other other doctor, and based on their views, try to identify the best option. I do not know what type of doctor will provide the most unbiased medical opinions. In my experience the opinions of doctors are so diverse regardign my DVT that Im sure that if I would go now and ask 10 doctors 5 questions, I would get 10 different opinions, and I have no idea which of those is most "unbiased".
4) I guess that any doctor that will deal with this case, will base high/her evaluation on the physicol examination and also evaluation of any other findings(ultraosund etc...), and actually all the data that is available to him/her. Perhaps some other tests are needed, like venogram, to accrately measure the flow, which is more accurate than the colour doppler.

best regards

Stefn

I'm not sure I am mentally ready to consider surgery at this point anyhow, but I am glad to hear what options are out there. It's all interesting stuff! I am not over what happened yet, and have major surgery coming up and 2 minor surgical procedures. None of which I am too psyched for. lol. But I want to hear different opinions nonetheless and value all of them. I know what my instincts tell me, but in the end, I believe I will find a better doctor to lead me in the right direction. Again, I just want a diagnosis and to understand what this really means for me in relation to the length of my symptoms and other illnesses.

A friend of mine was May Turner syndrome and they immediately did surgery on her leg. She is in Europe too. It must have been pretty bad. Poor thing. I have gov't healthcare which is limiting the types of quality docs I can see, and also the location. I cannot travel outside of the County for medical care.

The good part is is that the lower leg they say is better. Although I am sad to hear about you shilosmom and your clot that was initially missed.... which I have been thinking about. I have had severe lower left abdominal pain along with everything else for 7 years, but I am sure is menstrual, but it did cross my mind. Anyhow, the clots were seen 3 months ago, because they were from my ankle to my thigh, occluded. So, it is clearly a lot better, except for the pain and the same swelling almost as before. My ankle has swelling but could be muscular. The whole leg hurts and is sore, the entire leg. My knee is swollen all around and my thigh hurts. It is hard to bend my knee, but I can do it for short periods... where as initially I couldn't bend it at all.

I am not sure about the report, the terms are confusing because those are the techniques they use: 'compression, augmentation', so it doesn't make sense to me either. My primary just said it may resolve one day, it may not. He did not go into it further. The internist in the hospital DID say though that I need to stay on the anticoags since that clot is still there or chronic, or whatev, which I assume the hema will also tell me, but I am really not sure.

But I like Stefan's idea about seeing a diff type of doctor. That is exactly what I was thinking as well, aside from the hema. But I don't know what my new primary will think. I have fluttering in the chest/chest pain and I was told to go for a stress test from the Hospital, specifically from the cardio I had seen before, and the primary told me I didn't need a stress test. That they just need to cover their butts at the hospital. Which I believe, but this cardio had seen me out of network and knows a little of my history. I am very disappointed in most of the docs I have met down here and my frustrations are mounting. As you already know:) lol

I think I have to switch to the hema in Ft. Lauderdale. She is further away but my neuro recommended her intially. But I wanted someone closer.

I am also getting ready to schedule the appt with the neuro in NY about the APS and POTS. I need a specialist to get in here and guide me and hopefully I will get an idea of if I do in fact have an autoimmune condition. I mean, I know I do, just not which one.

But I am still in coffee mode here and need to pour a second cup ;) So, I thank you all for all your experiences being shared with me and your invaluable info.... since clearly I am in the dark!!! Shilos... too bad we are not neighbors!!!!

Thanks to all of you again:)
xoxoxox

I don't think it's an issue to help someone understand terms referenced in a report. Interpretation of someone's report results could be seen as giving medical advice. I don't think you're giving medical advice, just that it could be perceived that way.

But, my comments were generally to chipsanddip that the report is ONE component of a bigger picture and so that needs to be sorted out with a professional.

Another thing I remembered... which I keep forgetting to tell someone about... don't worry.. I will ask the doc too, I just have to write it down. Too much to remember!!! You know the red pinprick spots you get on your skin with clots... I have them on my clotted leg and had them from before. But there are also a few on my right leg and abdomen. Sorry I keep asking medical opinions.. I am just wondering if any of you had that and what your docs said about it? I'll forget again tomorrow!! lol

You mean purpura or petechia? Might be from anticoagulants. I have petechia on my torso and upper arms since being on warfarin. Your doc can tell you if it could be from that or something else.

I don't know what its called RMB, but the ER doc saw them when I first went in that day I was dx. They are tiny red dots, like a flat blood blister but tiny. The terms you used sound familiar. I remember seeing red dots before but I never paid attention, he was the one to point them out to me which is why I have noticed more now. Just went for a walk, can barely hold myself up today:( ugh

If you google petechia you can see images of it to know if it looks similar to what you have

With regard to these red spots, it is very difficult to say what these can be. Did you not meantion earlier that you have Antiphospholipid syndrome. It appears that this disease can induce some skin changes. Some patients with APS develop spots of varying sizes, but these classified as petechias (spots 1 cm).

Then there is the thrombotic thrombocytopenic purpura which forms tiny red spots, but this is extremely rare disorderthen I mean, super rare (one in three million).

I do not think that the skin changes you describe are due to PTS, but the colour/skin texture changes based on the Villalta PTS scale are (apart from swelling): Skin induration, (localized hardening of soft tissue of the body, the area becomes firm, but not as hard as bone), Hyper pigmentation (darkening of an area of skin mainly around ankle), Redness, Venous ectasia ("dilation" or "distention of veins in ankle area).

Yea they basically look like that but tiny and spread out. Not clumped together. Just random spots in diff area's. I also have tiny brown spots, little sun spots or birthmarks, so they blend in. I have to look closely (and use my glasses!) to differentiate the color;)

ooops, it seems that part of one of the sentence got cut in half...Here I try again...

Some patients with APS develop spots of varying sizes, but these can be classified according to their size as petechias (spots 1 cm).