Deep Vein Thrombosis (DVT) Support Group
Deep-vein thrombosis, also known as deep-venous thrombosis or DVT, is the formation of a blood clot ("thrombus") in a deep vein. It can be caused by something preventing blood from circulating or clotting normally. Join the support group if you are coping with DVT and find others who are going through the same challenges.
Hi all,
I've been reading the posts here for a while and wanted to share my story. I'm frustrated with the treatment I've been getting for my DVT but want to hear from others if I'm maybe overreacting.
Four months ago, what I thought was just a strained calf muscle turned out to be a DVT in my left calf. I was in the hospital for three days. The only thing that was unusual in any of the tests performed on me (and they did the whole gamut) was a low AT3 level.
I was put on Lovenox and coumadin. The Lovenox was just for two weeks. It's been just coumadin ever since. After some initial coag craziness (INRs up to 7.3), we've got it pretty stable with a 2mg tablet each day.
Here's the issue: After being on this routine for three months, I went in for an ultrasound. There was some improvement but also new clots were found. Furthermore, my right leg now shows the same signs of a DVT.
My doctor consulted with a Hematologist. His response was to keep on this treatment protocol and redo the ultrsound in another three months.
My thinking: If I'm still clotting even on this protocol, shouldn't there be a something else being done?
The problem is that I work for the hospital that did the testing and initial treatment. I get my healthcare almost free but it seems like it's hardly worth it.
At this point, my intention is to go get a second opinion outside of the system I'm currently in. It'll cost me but that's ok.
Am I being to harsh on my assesment of how this is being handled?
Thanks,
Lars
I've been reading the posts here for a while and wanted to share my story. I'm frustrated with the treatment I've been getting for my DVT but want to hear from others if I'm maybe overreacting.
Four months ago, what I thought was just a strained calf muscle turned out to be a DVT in my left calf. I was in the hospital for three days. The only thing that was unusual in any of the tests performed on me (and they did the whole gamut) was a low AT3 level.
I was put on Lovenox and coumadin. The Lovenox was just for two weeks. It's been just coumadin ever since. After some initial coag craziness (INRs up to 7.3), we've got it pretty stable with a 2mg tablet each day.
Here's the issue: After being on this routine for three months, I went in for an ultrasound. There was some improvement but also new clots were found. Furthermore, my right leg now shows the same signs of a DVT.
My doctor consulted with a Hematologist. His response was to keep on this treatment protocol and redo the ultrsound in another three months.
My thinking: If I'm still clotting even on this protocol, shouldn't there be a something else being done?
The problem is that I work for the hospital that did the testing and initial treatment. I get my healthcare almost free but it seems like it's hardly worth it.
At this point, my intention is to go get a second opinion outside of the system I'm currently in. It'll cost me but that's ok.
Am I being to harsh on my assesment of how this is being handled?
Thanks,
Lars
When you say your other leg is showing signs of a DVT do you mean it hurts the way your other leg did? That could be from limping and putting unusual stresses on that leg. Did they do an ultrasound of that leg?
Here's the new finding: Acute superficial venous thrombosis of the left greater saphenous vein in the mid calf. I didn't think of asking if it's possible that was missed the first time. Good point.
They want me to stay on the same protocol for six months. My doctor says they always asses at three and if it's not resolved, continue for another three and reevaluate.
What stinks about this is that the right calf looks and feels fine most of the time. We expected the ultrasound to show the clots to be gone and I'd be off the coumadin.
It was shortly after the ultrasound when my right calf began to be a problem. Upon initial diagnosis, their were bulging veins in both calves, but the right was really minor.
Now, there are times when there's a thick vein bulging out of the back of the calf and multiple small veins obvious on the front. It aches to the point where it's hard to walk on it sometimes. In my job, I'm on my feet most of the time and work 12 hour shifts. Usually, by the second night, I have trouble with the right calf.
My doctor examined it but wanted to see if it would resolve as I went through the protocol.
***That is basically what I was told at first also. Then, my genetic tests came back that I was Factor II. However, I think what you're being told in that regar is pretty standard.
"Upon initial diagnosis, their were bulging veins in both calves, but the right was really minor."
***When I had my DVT (mid thigh to ankle), I also had a vein behind my knee that bulged similiar to what you're describing. It finally went down as my clot resolved itself. However, even now, it is a little more "pronounced and larger" than in was before the DVT. I was told at the time of my DVT, that this particular vein had 100% blockage...the area when the most intense pain was occurring. Later, when I asked about it, I was basically told the most recent ultrasound showed clot resolution and the blood flow was fine in that vein. My hematologist's only theory was that the clot had possibly stretched or traumatized the vein somewhat, but as long as it looked good on the ultrasound & had good blood flow to not worry about it.
Hope you continue to recover well!
I wish you well in your recovery. i am not very well informed on the whole DVT thing but I do know it helps to trust the person giving you treatment. It eases up the stress you go through but I understand what it's like to worry and all. I don't see the harm of getting a second opinion. You risk confusing yourself with different opinions but if you ask the doctor specific questions and tell him why you are seeking a second opinion he may be able to help you understand your situation better which would be good for your health in general.
Another thing to consider, you mentioned that your INR was very unstable. You mentioned it being too high, but was is ever too low also? That's kind of common when we're starting coumadin therapy, ups and downs while we figure out how sensitive our body is to the coumadin. So another possibility could be that if your INR had been too low for awhile that the newly discovered clots formed then. If the doctors think that's likely they may not feel that it's even necessary to change your therapeutic range either.
Considering you're on your feet so much and suffering quite a bit with your legs, you could need a higher compression level for your stockings. My initial clotting was worse than what you've got, but I know for me the stockings in a low compression are next to useless, but I defnitely feel better when I wear the higher compression.
To me, it doesn't sound like anything is glaringly bad with your treatment so far, but if you don't feel good about your care, by all means get another opinion. I think that it's important to have a really good relationship with your doctor and to feel that you can trust him/her, and it's worth the effort to find someone you are comfortable with. Hope things get better for you soon!
Maintaining the INR in therapeutic range has been quite an adventure. Right now, I take 2.5 mg coumadin a day. Historically, that's been too much but I was too low last week on my 2.0 mg dosage.
One thing I found that helped a lot this last week at work was to just wear the compression hose and no other socks with them. I bought padded insoles to help with the feet. Just not having that extra restriction from the elastic on the socks seemed to make a world of difference.
Thanks again!
Do you still have dvts? if so, has the doc ever talked to you about the "clot buster treatment?"
If at any time you feel that you are not getting the right medical treatment, you should ask questions and do research. If you still aren't getting satisfaction, then most definitely seek a 2nd opinion. This is your body, and you know what is right for it. Best wishes to ya. smoochiessssssss all
I'm going too talk to my doctor today about this. In the past two weeks my AT3 level has dropped a bit, well out of normal range. I just feel like something else is going on and don't want to start dealing with a new problem six months into this.