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Occlusion of Common Iliac Vein Following DVT

Posted , 5 users are following.

Essie
Essie

Hi

I'm 37 and 2.5yrs ago I suffered a very large iliofemoral dvt in my left leg following hospitalisation for pneumonia. I was put on Warfarin for 6mths & told to wear compression stockings for 2yrs

I have suffered swelling & pain ever since & was told that I was suffering from Post Thrombotic Syndrome. My friend recently became a community nurse & suggested that I ask my GP to refer me to a vascular surgeon to see if they could help manage my ongoing symptoms. I underwent another Dopper & then a MR Venogram which revelled that I have a complete occlusion (blockage) of my common iliac vein & scarring in the exernal iliac vein. The common iliac vein joins up to make the vena cava which takes all the blood from the leg back to my heart. When I walk and put the vein under pressure the fluid & proteins in my veins are leaking out into my tissues & causing all the swelling & pain.

There is a possibility of stenting, but there is no guarentee that it would work & not re-occlude.

I was originally told that I would not be re-scanned after the clot. I now have more lifestyle changes to make to ensure that I maintain the 'best' leg that I can. I think it is worthwhile pushing your GP for a referral if your symptoms are not subsiding. I continue to wear compression stockings, which I purchase privately, as I do not get on with the ones on prescription.

I'd love to hear from anyone with the same issues, to chat further. Thansk you.

1 like, 8 replies

8 Replies

  • sheila91262
    sheila91262 Essie

    Posted

    Hi my son has post TS too from an extensive ankle to pelvis dvt. He ha s swelling and pain in the leg also. He has been referred via his GP to Guys in London to see a Vascular consulatant in Mr Stephen Blacks team. They are the number one research team in UK for this problem and do surgery and stenting which is v successful, see the internet for more info. Good luck.

     

    • sheila91262
      sheila91262

      Posted

      Hi Essie see my latest post as you sound like you need a really informed expert opinion such as at Guys and St Thomas London. My son was there today and they are going to stent him in his blocked vein to alleviate his symptoms. It is the only place in the UK to offer treatment. Hope this helps.
    • Essie
      Essie sheila91262

      Posted

      Hello Shelia

      Thank you so much for the information and wonderful news that your son is able to proceed with treatment.  I have been in contact with my vascular surgeon to discuss a referral to Guys, so hopefully I will be able to be seen and make an informed choice going forward. I am a little apprehensive as I have been in this position for coming up to 8 years and each knock back is painful (mainly psychologically), but the thought of being 'fixed' is truly brilliant. Keep in touch and let me know how your son gets on. Best wishes, Essie 😃

    • sheila91262
      sheila91262 Essie

      Posted

      Hi Essie,

      My Son is going to Guys soon to have technical measurements taken for preparation for the stenting and will be on warfarin for some time afterwards. The last letter said the symptoms are linked to May Thurners syndrome, info available online. How are you getting on? My son left his stocking off for a hot day recently and was surprised at how swollen it became, a question that was asked of him at hosp. I would love to hear from someone who has been treated for PTS.

      Good Luck

    • sheila91262
      sheila91262 Essie

      Posted

      Hi Essie, Re May T S I have joined a facebook discussion group which is v informative. It starts DVT May etc facebook. You might find it interesting as it includes many people who have had stenting and wheras not all have had complete success as it can re clot at  least ongoing treatment is possible.

      My son has had to delay his stenting for a few months as he is having an operation because of his original problem of Ulcerative colitis. He has left his stocking off for a day as they want a record of the symptoms in his leg at Guys. Have you had blood tests to check there is no underlying cause for the DVT apart from being in Hosp?

      Let me know how you get on. Good luck

    • sheila91262
      sheila91262

      Posted

      Hi Essie, hope to hear how you are getting on.

      .I have read your message elsewhere! still me as I am the one in charge of research. Boy doing v well! He had a full reversal of his ileostomy at John Radcliffe hosp in Oxford in July and all good so far. Having had a life changing surgery in a less than wonderful general hospital to now a successful, disease free back to Normal op in one of the best departments in the UK ,is great for all of us. Medically, psychologically and optimistically changed. Let's not forget how much the mind is affected by these developments.

      Now all he has to do is see the big Mr B in October( delayed by the gastro surgery and recovery). He went to have blood tests in July and all is good, so we will see what happens in Oct. He is super fit and time etc has helped and he is 1 cm swollen in left leg even if  on his feet all day, if he wears stocking. On the occasions when he wears shorts and leaves the stocking off it swells to 3 cm approx. He can play a round of golf and not be in pain. Yippee. 19 months post DVT. Collaterals not visible but prob helping. Which brings me to my ongoing research as I am keen that he is not worse off after the stenting if he goes ahead. They may say wait until he is 2 years after DVT and see if he needs a stent. Would so like to get further info from post stenting Uk patients. In Feb  he saw the man and he had operated on 130 patients with great  success but each one is different in their symptoms and background etc.

      Do hope that you get the treatment you need. To go somewhere where they understand and can help is so beneficial, thank goodness for research and empathetic treatment from the Good guys in London.

      We are at the Ombudsmen stage, as we have lodged complaints against the hospital, and they are investigating 2 faults ,the second being the completely avoidable DVT that he will have to live with. We will prove negligence and publicise the dangers of DVT, especially post hospital stay and surgery as mistakes still happen. When the NHS is good its very good but when its bad......

      Good luck.

  • alison50557
    alison50557 Essie

    Posted

    I too have occluded left iliac vein.  I had trauma followed by pelvic and left leg thromobisis at age 33 (warfarin 6 months).  I had pelvic clots again at 42 (after trauma), 48 (travelling), 49 (warfarin failure+trauma).
    • sheila91262
      sheila91262 alison50557

      Posted

      Hi All.

      We went to see Mr Black at St Thomas Hosp and all was very positive. My son will go ahead and have 3 stents to open up his veins. This will hopefully cure his post DVT symptoms and he can return to his usual mobility and no pain. St Thomas is still the ONLY UK hospital where this treatment is available.

       

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