Subclavian clot is back :(

My pacemaker was implanted 02-11. From day 1, I complained to doctors about poor circulation in my left arm/hand.

7 months later, the doctors finally did a venogram and found a clot on the subclavian vein surrounding the the PM lead. I was on warfarin for 5 months until doppler ultrasound showed the clot had dissolved. They took me off warfarin and I went 2 months symptom free.

Then, last week, the symptoms returned. I got another ultrasound and there was again a subclavian DVT. I do not have the details of the study, but I am assuming it is the same clot, it just dissolved a little with the warfarin, and continued to grow when I went off warfarin.

I am posting because I am trying to decide what treatment path to take. I could return on warfarin, but I suspect I will be on it for life. Or, I could allow for the vein to continue to clot, and hopefully build enough collateral veins to help with my symptoms. I understand there is a small chance of PE associated with DVT, but the clot seems to be chronic, and my EP doctor says it is very uncommon for old clots to break lose.
For now, I am taking a baby aspirin and exercising.
I've read that somewhere around 20-30% of patients with pacemaker have occlusion of subclavian vein, they are just asymptomatic. In my case, I think the symptoms are far less bothersome than the daily horror of managing warfarin treatment.
Just hoping some of you may have input! Thanks

2 Comments

I guess if it were me I'd go with

by janetinak - 2012-04-22 05:04:41

the Coumadin if that is what the docs recommend. I am saying this from the perspective taht I have been on Coumadin since 1999 for Afib. I say Coumadin as my Cardio's believe that it is easier to control the brand named Coumadin that the generic warfarin. I go to the Coumadin Clinic at my heart doc's institute & have a finger prick INR test once a month. They have regulated the dose to my activity level & usual diet so it works for me. Hope this helps,

Janet

What is so horrible about Coumadin therapy?

by kathykat11 - 2012-04-23 12:04:56

I have been taking coumadin since 1972 except for the years I had off to have my children, Having had a clot break off and head to my brain knocking out my whole left side from my shoulders down definitely was a lot harder on me and my family than taking meds, and periodic blood tests. My doctor told us that having a clot break off was a one in a million chance.that was the first peice of clot to break off,there were 12 more tiny pieces over the next 2 years and then a huge clot broke off and knocked oout my left side from my eys on down. I still have residual weakness and a very bad limp. Take your meds skip touch football and thank heavens you have a chance to be here to wait on some improved therapy. you will also need to be a bit more careful about your diet than the average person but life can be wonderful if you are here to live it.
Best wishes. If you would like to contact me for some tips on managing your diet PM me. I am always here and check once a day.
Kathykat11

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You are always wired and full of energy.

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My pacemaker is intact and working great.