PTS (Post Thrombotic Syndrome)

Here is one that touches home for me, about 3 weeks ago I have been diagnosed with PTS, so yes I will be doing some research on it...
For me, the valves and veins (deep veins) were damaged when the clot (the one I had in 2007) was traveling via my lungs and was jammed in my pelvis (btw, I probably am lucky that it stopped there, PE would have been the result had it NOT stop, I GUESS.)

The post thrombotic syndrome (PTS) is a chronic condition that develops in 20% to 50% of patients after deep venous thrombosis (DVT) 1,2; it is thus the most common complication of venous thromboembolism (VTE). PTS is not merely a cosmetic or “nuisance” problem. Rather, it is a costly and burdensome condition in terms of dollars spent and effect on quality of life and productivity. (more...)

-Compression therapy for treating stage I and II (Widmer) post-thrombotic syndrome

-More on PTS

Be advised, some pictures are of extreme PTS cases. (not pretty)
-S'more

-Effect of Post Thrombotic Syndrome (PTS) on Health-Related Quality of Life After Deep Venous Thrombosis

sorry to hear that big d. I hope treatment goes above average and you are back to normal soon

Hey Justin,
I had not seen this post, thanks for the concern.
Treatment for it right now is compression socks, for life, could be worst. At least I'm not on any anticoags, been just over 50 days off the junk, you think I'm bummed???
No, as soon as I have recoop from my bladder, you know what I'm doing. Yes, back on the bike...

The ongoing search for better answers regarding PTS.

http://circ.ahajournals.org/cgi/content/full/121/8/e217

http://en.wikipedia.org/wiki/Post-thrombotic_syndrome

Lately, I have been doing lots of reading on PTS, trying to find something new, but to no avail.
The same Dr are doing the same research and come up with the same conclusion...

-That more research has to be done to obliterate DVT PE to eliminate PTS.
- That 50% of the people that had or have DVT will get PTS.
- The only thing they can recommend is COMPRESSION THERAPY
(compression socks or stockings).
-Worst case scenario is skin ulcer, along with pain, swelling and skin
discoloration.

One thing I am checking out is this unit called a "Venowave" that fastens to the back of your calf and creates an upward wave that pushes the blood towards the heart, so they claim.
www.venowave.com

But otherwise, no changes are taking place, same ol', same ol'.

have you tried the venowave, and if so, how's it working out for you..thanks for the link to it . i too come up empty handed on news about pts, have been searching for sometime.

I have send the link to the Research team here in Ottawa, waiting for their respond, Tom (retired navy) brought it up to his research team in Connecticut and they seem to think that it's a massage unit more then anything. So... I think we are back to FUGLIES and elevation.

so, the search and hope continue.

Look at warfarin, since 1952, I'm not surprise that it's still the FUGLIES AND LEG ELEVATION that works?

Hi,

I am about to be diagnosed with Post thrombotic syndrome. Whilst I am awaiting outome of scan I am sure it is as the symptoms match those of the description. I have been recommended compression stocking. Don't beleive they are making any difference. I have spent hours of research on the internet re advances in surgical treatment. Their is a clinic in Hawaii which seems the most advance in terms of technology and tecniques. It is rang by Dr Kristner. Does anyone know of any other advances being made?

No, is the answer to improved research on PTS. Compressions socks and leg elevation is still THE treatment.
Talking with one of Canada's leading researcher on PTS, "we need more $$$ and more research on PTS".
I have been diagnosed with it in 2009 and I am wearing my socks every day and I do see the difference, without them, my leg swells up and is painfully painful (yes, that describes it quite well).
If you get anymore info from that Dr., I would be glad to read it and share it with some of the Dr. up here in Canada and see what they think of it...


BTW, welcome to LADVT.

Thanks Dero,

I have my scan tomorrow. I will then speak with my consultant in the UK to find out what the latest developments are. It good to know someone like you understands. It has been frustrating as I have encountered a lot of apathy and lack of understanding what the condition of Post Thrombotic syndrome entails. I will keep trying and will never give up until I can find an operation that can permanently cure the condtion. I will ensure if I come up with something I will share it as I would like to help others it possible.

Not too worry, no apathy nor sympathy from this place, heck we are all in the same boat...
PTS is my life, I feel it and hate it!!!
But, at least we are better then the ones that did not make it... (RIP)
THAT is the way to look at it.

That, is what I mean with the homepage...

http://www.ivanhoe.com/channels/p_printStory.cfm?storyid=26687

Certainly, I will be keeping an eye on this...
Thanks.

I know what you mean about being "lucky" the DVT clot got stuck in your femoral iliac vein instead of going further and ending up in your lungs. I feel the same way. But it really takes the wind out of your sails when you realize you now have PTS and have to wear the stockings and keep your leg up as the only treatment for the rest of your life. I also have restricted blood flow that causes tingling sensations in my leg. I have found that Aleve helps take the inflammation inside my veins down to a point where it helps some too. (be careful of it though- it can do a number on your kidneys). But more than that or the socks..it's keeping my leg elevated that does me the most good. But sometimes it is tempting to sit too long because it releives the pain, only to realize that my hip joint is starting to hurt more where I sit. I have to remember to get up often and walk around.
For me, I cannot stand more than 5 minutes without breaking out in a sweat from the pain, and I cannot do housework or cooking even. I tried draggging a stool around to sit on while cooking, doing laundry, etc. but it didn't work because it cut off circulation in my leg more. I am very limited as to what I can do. I have been homebound for over 4 months now. I kinda feel like I am a prisoner of this awful condition. Doctors don't have a clue how much this alters your life for the worst. I used to be able to tough out anything and stay positive, but I find my I am not really living anymore, just existing with this condition. I hate how it has beaten me down and overtaken every thing I do.
Like I mentioned on another thread.I have a major operation I am supposed to have, but I cancelled all my appointmentsbecause I fear more clots (it's a 4 hour op). I fear the blood thinners even more. Honest. The thought of going on the thinners again scares me more than the cancer.
Hospitals are always "snaking" wires, stennts, etc up into peoples veins and arteries....why doesn't some one invent a procedure to go in and gobble up the clot itself? I would even be willing to let them experiment on me first if they wanted to. Living with this condition is that awful. Everything I do is affected by it and I really hate that I can't do anything about it. I have always been independent and tough-willed and got through everything life has thrown at me. But this stuff just keeps grinding me down.

On the topic of PTS...
http://medicine.utah.edu/internalmedicine/generalmedicine/Conferences/PTS/index.htm

Hi Dero,
I'm curious to to know when your PTS started after your DVT's? 3 weeks ago I had major DVT's in my right calf (3 of the 4 veins were full) that led to multiple Bi-Lateral PE's. Friday my doctor decided I will need to be on Coumadin for life. I'm trying to collect all of the information that I can which led me to your forum. I have found lot's of great info.

Hi Eric,
Glad you found LADVT, like I tell many, as much as I hate seeing anybody here, welcome to LADVT(Life After DVT).

After my first DVT (July 2007) it was two years later that I was diagnosed with PTS. For my latest DVT (July 2011) I have been wearing a comp. sock(30-40 comp. ratio) and so far I don't think I have PTS in this leg.

They normally say, that it takes around 18 to 24 months for PTS to develop,(post clot) but as we all know, there is no set rules as to what, where and why things happen in DVT land.