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.
Hello,
To cut quite a long story short, I have a Subclavian DVT which was diagnosed in 2012. It was diagnosed whilst I was in the process of getting fit and doing weights training. Prior to that though, I had treatment in 2007 for Hodgkins Lymphoma (cancer) so I had a PICC line in my subclavian vein to help administer the chemo. It was hard for the Doctors to determine if my clot happened because of the weights training in 2012, or if it had been sitting there since I'd had cancer in 2008. It only became symptomatic in 2012.
I was given warfarin for a year, which didn't work at all. The clot didn't budge. After coming off the warfarin, I was referred to a vascular surgeon who diagnosed me with thoracic outlet syndrome, so he chopped me open in the hope of stenting my vein. He couldn't stent the vein because the clot was too hard so now I just live with the clot which I am mostly cool with - I just get arm swelling and shortness of breath that I treat with a compression sleeve, a healthy lifestyle, and listening to my body.
Does anyone else have a chronic clot? If yes, it would be good to have a chat.
Cheers
To cut quite a long story short, I have a Subclavian DVT which was diagnosed in 2012. It was diagnosed whilst I was in the process of getting fit and doing weights training. Prior to that though, I had treatment in 2007 for Hodgkins Lymphoma (cancer) so I had a PICC line in my subclavian vein to help administer the chemo. It was hard for the Doctors to determine if my clot happened because of the weights training in 2012, or if it had been sitting there since I'd had cancer in 2008. It only became symptomatic in 2012.
I was given warfarin for a year, which didn't work at all. The clot didn't budge. After coming off the warfarin, I was referred to a vascular surgeon who diagnosed me with thoracic outlet syndrome, so he chopped me open in the hope of stenting my vein. He couldn't stent the vein because the clot was too hard so now I just live with the clot which I am mostly cool with - I just get arm swelling and shortness of breath that I treat with a compression sleeve, a healthy lifestyle, and listening to my body.
Does anyone else have a chronic clot? If yes, it would be good to have a chat.
Cheers
Fast-forward to last year. I was having some unexplained leg pain and my doc ordered an ultrasound. No new clot, but to my surprise the ultrasound found that my old "chronic" clot was gone as well. So, somewhere between five and nine years after diagnosis, that clot disappeared. Apparently, there was some slight scarring, so they could tell where the clot was, but the bulk of it was gone. I was quite shocked.
I will note that warfarin doesn't dissolve the clot. It only stops it from getting bigger. (And it stops new clots from forming.) Your body's own systems do the heavy lifting when it comes to dissolving and it really can take quite a while. So, it isn't that the warfarin didn't work for you, just that your body didn't dissolve the clot as well as it could have during that time.
I guess what I'm trying to say is that it is possible that you could continue to see improvement with your clot. No guarantees of course. Obviously, having one in the arm vs the leg is different, but I'd imagine that the body continues to work on these clots for quite a while. Even if your body doesn't do much more in terms of dissolving your clot (since it sounds quite hard), it may still develop alternate blood pathways around it and the issues you have now may continue to diminish over time. Either way, it does sound like you've got a good healthy attitude about everything, and that's worth a lot all by itself.
I guess the care from my medical team went from 'ticking time bomb' kind of treatment, to 'oh that's not going anywhere' and I found the change a little hard to digest. Either way it's nice to hear someone else's story and experience.
Wishing you good health and most definitely no more DVTs :-)
Then, at some point, all that shifted. At 6-12 months, the clot tends to harden and become part of the vein wall ... kind of like a big scar. It isn't in any danger of breaking off and traveling at that point and there's really nothing to be done from a medical perspective at all. I know I had a couple appointments where I walked out feeling like they had pretty much blown me off ... but then I realized that they were just checkups and that checkups are really pretty boring. I'd just gotten used to everything being a big deal that a run-of-the-mill appointment really felt like I was getting ignored.
Ha! These are weird problems to have, for sure, but I've been there as well. Hang in there!