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Anyone had post-thrombotic syndrome?

Posted , 4 users are following.

holly75952
holly75952

I'm not sure if I've got it or if I'm just experiencing symptoms of the DVT.

?If anyone could give me some information that would be really helpful

0 likes, 3 replies

3 Replies

  • sheila91262
    sheila91262 holly75952

    Posted

    Hi Holly, I suggest you search on patient search under health information, has some useful info. I have written loads on here on forums. Will give you quick version. My son had a massive DVT in his left leg, started in thigh and spread from ankle to abdomen. His DVT symptoms  reduced as his body healed it but left behind scarring in his veins leading to swelling in the left leg and pain. He was diagnosed after 6 months as having PTS and also May Thurner syndrome which had never been mentioned to us before. He was diagnosed after being referred to Guy's & St Thomas Hosp, london, by a Vasc Cons and interventional Radiologist who did all sorts of tests including intervenous scanning. We weren't suprised by PTS as the DVT was so huge they said he would prob get  it. His local hosp were useless, go away, take Warfarin dont exercise if it hurts. GP referral to G& StT said exercise a lot, take painkillers if necc, wear prescription compression stocking. Your body will heal over 12 months as much as it will,  and will form collaterals, small veins which will increase in size to carry more blood. We did the internet research to get to London as almost no info out there previously. Mr Stephen Black put in stents in Dec and son has improved hugely, as active and flexible as before. Actually his story has been published online to promote DVT & treatment awareness, promoted by Thrombosis UK, a charity online which you might like to look at. They also have a facebook page. Search, "DVT, might not play sport again" to read how he has progressed from this life changing condition. Let me know how you get on.

    I still write on here and several FB pages to help spread the word.

    Sheila.

    • cora06849
      cora06849 sheila91262

      Posted

      Thank you Sheila.  This sounds very similar to the advice and treatment I received after my first DVT 28 years ago.  Since then I suffered a swollen and painful leg and lengthy and painful treatment for ulcers despite following all the advice I received.  I now realise that I must have had post thrombotic syndrome, though the nurses at my GP practice simply treated my symptoms with varying degrees of success.  Now all this time later I have had a second DVT in the other leg, and current advice isn't much different.  I have worn surgical stockings for the last 27 years, and the first time I was on warfarin for 6 months.  Now I have to take it for life, and hopefully won't have all the problems I had last time.  I was never offered stents or any further treatment.  When I was scanned for hip replacement 12 years ago, the verdict was that "these two legs shouldn't belong to the same body", there is such difference in size and shape.   But all I can do is carry on with the stockings and the warfarin, in the hope that things won't get any worse.  

      Thank you for sharing your son's experience.  I'll check out Thrombosis UK as you suggest to see if anything further can be done.

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