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DVT and Post Thrombotic Syndrome, do you have symptoms and don't know what to do next?

Posted , 16 users are following.

sheila91262
sheila91262

My son had a large DVT in his left leg and was told to take Warfarin and wear compression stocking but nothing else could be done. We have learnt through Thrombosis UK charity  that there is treatment available at St Thomas' Hospital in London. My son has had several visits for tests and now is going to have minor surgery to stent his blocked and scarred veins to improve his blood flow and aleviate swelling. Good news for a change. Ask me any questions about the process if this affects you

 

6 likes, 117 replies

117 Replies

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  • jasmin281
    jasmin281 sheila91262

    Posted

    Would like to say thank you for your positive post after reading so much negativity and dismissive GPs 

    I’m 45 had a major dvt the hospital missed for weeks ( ******me off more now)I was at 18 - am on warfarin for life - blood clotting protein disorder

    Pts - swollen left leg sometimes more prominent than others

     Veins and discolouring around ankles gradually worsening year on year

    Didn’t stop me raving through the nineties and the naughty s  as well 

    As gym n running 4 times a week

    However

    Using aqueous cream more and steroid cream recently as small sores around ankles are getting more frequent and don’t want them to ulcer 😔

    Apart from exercise and elevation and dreaded stocking I wondered if there was something more fundamental can be done - want to get to 75 in the best shape possible

    Have 2 young kids want to remain active for them and me

    :Stuart 

    • Karinbra
      Karinbra jasmin281

      Posted

      Hi Stuart

      It sounds like you did all the right things re exercise and using the stocking. My daughter also found swimming was a great way of maintaining  the blood flow and staying fit. 

      However if you are getting ulcers despite the care you are taking , it might be worth asking for a second opinion and approaching Mr Black at Guys and St Thomas’. As far as I’m aware he is still the only person doing anything for people with post thrombotic problems and is very thorough in using scans to assess what is going on to see whether his stenting interventions can help. Otherwise I had heard there is somebody in Galway but have not much more to offer except to suggest an internet search. 

      Hope you find some further help from these sources. 

      All the best 

      Karin 

    • jasmin281
      jasmin281 Karinbra

      Posted

      Thanks Karinbra

      I have been good on exercise not the leg stocking or the creams (after thought)

      I’m going to give the stocking another go 9-5 in the office but it depresses me - apart from popping the pills at night I feel normal 

      However if it prevents further marks on legs then it’s worth it

      I’ll try and get a meeting with my Black I’m hoping that he can help the scarred vein if not some reassurance would be nice

      On a positive the sore is almost gone with the steroid creAm 

      Off bowling with the kids have s great day and an even better 2018 

      :s tuart

    • youngatheart1
      youngatheart1 Karinbra

      Posted

      Hi Karin, can I ask how you get referred, is it through the NHS so your own GP or is it private?  I can't really find out anything on google, I am probably not looking at the right things.  Thanks

  • army183
    army183 sheila91262

    Posted

    Hello Sheila and everyone who’s posted on here. My first query is if this chain is still active as much of it seems to be about 2 years old. If the answer is “yes” then it seems a good place to make a query rather than starting another (similar) topic. 

    Cheers all

    Big D

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