reposted ...new to the DVT forum

I too am grateful to have found this site. Here is my story of "how I found out I had a DVT." I fell from a cottage deck, and badly sprained my left ankle and tore three ligaments. It wasn't until three weeks later that I found out I had a DVT. Here is how this was handled: a) was immediately put on Warfarin, then b) told to get off oral contraceptives, after 20 years of use, I am just turning 40 next week; then c) given an air cast for my ankle which cut off circulation so I rarely wore it for first few weeks and told by the ortho surgeon " well I could give you physio but no one will touch you cause you have a blood clot". I was then given a battery of tests to see "why" else this may have happend; came up positive for Lupus anticoagulant and low protein C and S levels; but that was promptly dismissed by the hematologist who just looked through me and said "keep taking thinners". So, given all of this....the pain is still awful and I am into month four with my DVT, I have been off work for two months, I am a teacher a desperate to get back to work...but the pain is unbearable. I have sought so many answers from different healthcare professionals...and being told very little, harkens back to "sorry here are your socks" ; finally got socks but my GP has said; "don't wear it with your painful clot". So I am incredibly frustrated!!!! not sure WHAT to do in terms of getting better, find it tough to work out at all..let alone walk.

I haven't been referred to a vascular surgeon, I see another hemotologist in November cause the first one just said "this should all disappear in a few weeks...it is a small DVT";' GAWD it does NOT feel SMALL!!!

So here I sit, in my time off, with WAY too much time on my hands, doing what research I can find....and the only consistencies I see, are that doctors seemingly have NO consistent method for treating DVTs!

Not sure how to get into the "groove" so that I feel capable of going back to work....there are so many conflicting messages about the duration of how long a clot takes to dissolve...and what if..it doesn't...what then? can I return to work and be the same? unlikely? How do I even work out when I can barely walk??

Any thoughts? help??? so glad this forum exists. I know I echo many of the same sentiments that others do.....

thanks

Hi Dalpatria!

You definitely ask some important questions and I think a lot of people here can understand your frustration. I am not surprised that different doctors have given you different advice. This seems to be the case for many people on the forum (myself included). This is because not a lot of research had been done on DVT and/or anti coagulation therapy (that is, compared to other, more common, medical fields). The basic treatment has basically remained the same for a few decades now... when that doesn't work, doctors don't really seem to know how to handle their patients.

If your DVT was caused by your injury, and not because of any genetic factors, it should be, in theory, fairly treatable and should not require life long use of anticoagulants. Of course, I am not a specialist and every case is particular. My best advice is to keep going to see specialists, even if they offer confusing advice... stay on the doctors' radars.

As for tips on getting better, keep telling yourself that it will, eventually, get better! It's all about baby steps : keeping your legs up, even with a pillow at night, watching your diet, monitoring your INR, not wearing any constricting clothing (watch out for socks with elastics and avoid tight jeans while recovering!) and so on.

I'm really sorry to hear that after four months you can still bearly walk. You should definitely push for routine scans to determine if the DVT is starting to disappear; it seems to me that you will need that physio to help with your injury.

Anyway, welcome to the site!

Thank you for your reply; it is appreciated. I am still off work, and I cannot believe there seem to be few to no ideas about how to "get rid of the clot". The clot is seemingly not dissolving and I am doing everything I can, seeing a laser therapist to deal with ankle, getting massage therapy to help with pain, seeing a naturopath to deal with weight loss but it is still pretty painful.
The naturopath also allowed me to look at a sample of my blood; and he and I were shocked to see that it is still very "clotty" even after three months on thinners! I have had almost 24 blood tests, and none seem to conclusively determine that I have a predisposition to clotting...but it looks like I may. Just not sure. Very frustrated. Thanks for support though!

What are those 24 blood test you are referring to? Your INRs?
After two DVTs I had never had 24 blood tests while I was on anticoags?

Just wondering...