Unprovoked DVT recovery times? - Anticoagulation S...

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Unprovoked DVT recovery times?

KTS16 profile image
16 Replies

Hi all, my husband was diagnosed with multiple unprovoked DVTS in his leg from groin to ankle 4 weeks ago. He has been taking Apixiban ever since. Whilst the pain in his thigh went quite quickly after starting the treatment, his calf is still painful and swells, he is exercising gently daily. The GP at the DVT clinic suggested that after 2 weeks or so things would settle and he should resume normal exercise/lifestyle! He is nowhere near this. Interested to hear from others how your recovery went - appreciate we are all different. Many thanks.

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KTS16
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16 Replies
highlander777 profile image
highlander777

Hello. I also had an unprovoked dvt after riding my bike. That was 2 years ago. I am off the thinners . My right leg is still swollen. I still ride my bike and play golf but my leg does swell during the day. I am told everyone is different but I am 49 so I guess unless I have some sort of surgery my leg will remain swollen. Good luck

KTS16 profile image
KTS16 in reply to highlander777

Thanks Highlander777 good to hear other experiences as this is all new to us and so unexpected.

in reply to highlander777

You decided to off the thinner ?

Hi,

I am 2.5 years since my first unprovoked DVT / PE further on the journey to recovery and unfortunately had another unprovoked DVT in Jan. this year. As is the procedure after the second unprovoked DVT I was referred to a haematologist for consultation / blood tests. Just had the results and it was identified that I have a gene passed from one of my parents which as you get older make you more susceptible to having DVT / PE. I will now be on anticoagulants for life. My left leg still swells up in the calf / ankle area which is caused by the damage done to my veins after the DVT's. I now do not expect a full recovery, which does happen with a high percentage of people like myself.

ladyluck53 profile image
ladyluck53 in reply to

Kinesio gold tape helped me, both with pain and swelling.

Rousseau profile image
Rousseau

I think that you GP was rather optimistic. I had a DVT in my popliteal vein in 2013 and then a year later another one in a smaller vein in my calf. Recovery took some weeks and as I understand the leg never gets back to normal because of scarring of the vein which means that the valve works insufficiently; leading to some pooling of blood and fluid in the lower leg and swelling. I wore a compression stocking for 18 months and then discarded it as the evidence of its usefulness was inconclusive. Exercise and elevation are good. I still get occasional bouts of PTS - Post Thrombotic Syndrome - which exhibits similar symptoms to a DVT and can last several weeks.

cmegarry profile image
cmegarry in reply to Rousseau

I have recently had a similar experience to this. I was diagnosed with an unprovoked DVT in my femoral artery just before Xmas. It initially manifested itself as a pain behind my right knee which the GP diagnosed as 'Muscular'. The pain and swelling gradually got worse and after 4 weeks i went back again to the GP. My Fathers DVT presented the same way in the same place and he told me to go back to the GP and say i needed to be referred to A&E for a doppler scan (he's a GP). I did go to A&E and they found a proxmial DVT. I was treated with APixaban for 3 months. Whilst the initiall swelling and pain receded quite quickly the swelling in my lower leg never went away completely. When the warm weather started in may and i put on a pair of shorts, my husband immediately commented on how much larger my right leg was than my left. Fearing another clot i went back to A&E and they scanned me again and said that chronic scarring to the veins and damage to the popiliteal valve had affected the legs ability to push the blood up and down my lower leg. I have to wear thigh to toe compression stockings which are hideous and am back on APixaban indefinetly now. I'm very interested to hear about the efficacy of prolonged use of compression stockings as they're awful to wear and even worse in the summer time. I'm still hoping that my right leg swelling will reduce over time but from what i'm hearing it will probably stay the same.

Rousseau profile image
Rousseau in reply to cmegarry

I can't be categoric about the efficacy, or lack of, the use of compression stockings. Birmingham University have tried to get funding for research into this for the past 2 years and failed. They were hoping, amongst other things to follow up work done in Canada led Susan Kahn which concluded that they made no difference to incidence of PTS. Summary here: thelancet.com/journals/lanc...

ladyluck53 profile image
ladyluck53 in reply to Rousseau

They help with circulation which can aid in healing, support. I think it really is individual though.

Lopat profile image
Lopat in reply to Rousseau

I think they do help as when i am not wearing I get tingling in my legs once I put on they stop and they help with my leg when was swollen from break I stopped wear for a while , I ended up with a dvt that caused a blood clot on lung, I think if one is on their feet all day its best to wear especially if your legs do swell up

Lopat profile image
Lopat in reply to cmegarry

Hi their about the compression stocking, I have to wear them too ,had dvt in broken let that caused pe on my lung, theirs a site called legs uk that sell sheer compression stocking and tights in lots of different shades, the tights I wear when going out somewhere special with dress and they also are great with short, I don't wear all the time as when wearing trousers or jean I wear the stocking, they do open toe, class 1 s are from £12-£25 a pair in tights stocking a bit cheaper, however a class 2 s are quite expensive, but for special occasions, I think its worth it , I've brought 3 pairs, I wasn't sure at first as they are so sheer but they look great, hope this helps

ladyluck53 profile image
ladyluck53 in reply to Rousseau

I Had them in both legs with the left being more extensive. My right leg healed complete, left I still have a few stable clots and post thrombotic pain and swelling. My valves do not work well on that side. Kinesio tape works wonders for me, and helps the swelling.

cmegarry profile image
cmegarry in reply to ladyluck53

How do you use Kinesio tape? I've had a DVT above my popiliteal valve and have daily swelling in my lower leg. I have been prescribed full length compression stockings but keen to know if there are alternatives to these.

Thanks.

moo196 profile image
moo196

My unprovoked cvst won't ever clear completely....just have to be the best I can be with it.

Good luck ☺

ladyluck53 profile image
ladyluck53

I Had extensive clots as well. I do understand your husbands pain and asjustment phase both physically and mentally. Things I found very helpful were swimming, this really helped get things going. I also found support and pain relief from Kinesio tape , altheletes use it. I still use it today fir post thrombotic pain and swelling. Short walks followed by protein drinks and putting legs up was helpful. Is he wearing any support?

KTS16 profile image
KTS16

Thanks for all the comments. The DVT symptoms have improved with elevation, regular walking, Stocking support and Apixiban for the last 7 weeks. As they were "unprovoked" scans were done which have revealed underlying Liver Cancer, hopefully now caught will be treatable. We were told when DVTS were diagnosed that 1 in 25 unprovoked cases are down to an underlying cancer, still has come as shock. The DVTs may have just saved his life. Wishing you all out there good recovery with your clots.

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