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May Thurners Syndrome

Posted , 2 users are following.

alison50557
alison50557

Helloooooo.  Is there anyone in this sytem who knows about it?

0 likes, 6 replies

6 Replies

  • sheila91262
    sheila91262 alison50557

    Posted

    Hi Alison, My son has this after developing a post surgery DVT 18 months ago. I have done lots of research into post thrombotic syndrome as that is what he has now. I have put lots of posts on here under VTE, DVT or post thrombotic syndrome, so please look at details there. He is being cared for at Guys and ST Thomas London who are the experts in vascular complications and his consultant is Mr Stephen Black. My son has had several sorts of tests there and he saw the consultant recently who has agreed to do a small operation in June to put in a small stent in his groin area, by injection in the leg. This is to reduce the scarring from the DVT and to open up the vein in the groin where the vein is under pressure from the artery next to it. The letter that came to explain the procedure called the problem in the groin, May Thurner syndrome so I looked it up online and it certainly makes sense, especially as my son has left leg problems only because the way the blood vessels are arranged. Some people have the problem without a previous DVT.

    Hope this helps, and if you need treatment G&St T are the best in business and its not just me saying it, they are the world specialists and the only ones in UK doing this treatment.

  • sheila91262
    sheila91262 alison50557

    Posted

    Hi Alison, I can't remember who said it but on facebook there is group discussing May Thurners syndrome called DVT May Thurners syndrome which you can join. I have joined as it is possible to speak to people who have had treatment in UK aswell as US
  • alison50557
    alison50557

    Posted

    Thanks Sheila, I found the Facebook page shortly after posting this, it has changed my life!

     

    • sheila91262
      sheila91262 alison50557

      Posted

      Good, finding out what and where to research and speaking to people who have similar experiences is so useful, it took me 9 months to get info about treatment in this country. Thank goodness for the internet. Knowledge is not always easy to come by and its useful to share.I use forums on patient.info to discuss what has happened to us to help with frustration and spread the word. My son gets on with life as he is young and I ask questions! but it helps me to cope with the ignorance and bad luck that got us here.After all we only heard the term MTS a month ago!

      Regards

       

    • alison50557
      alison50557 sheila91262

      Posted

      Sorry, I missed this reply.  There is so much to learn, I feel like we at at the cutting edge of generating new knowledge!  I gor a referral to Mr Black today - hurray!
    • sheila91262
      sheila91262 alison50557

      Posted

      Hi I hope it all works out for you.

      My frustration involves the ignorance that the general medical people don't seem to know the latest treatments and places to go for help. My son was told to go and not exercise much and stop as soon as he gets painful, take up swimming. He is a very active sportsman and his job is coaching sports so they didn't treat him as a human being with feelings at all. As soon as he went to Guy's he was told exercise as much as you can as it will encourage the collaterals to open up and improve the circulation. Why didn't the original hosp know that? also they said there was no treatment and his condition would deteriorate and he would be less mobile as he got older. All I can say is that the internet is so useful as I found that in the USA they had been stenting for some time so it spurred me on to find somewhere in the UK. Now it would appear that York and Manchester hospitals are also treating PTS. Why do we need to drive this ourselves? The charity Thrombosis UK is also very helpful.The more we can do to spread the word about the dangers of DVTs and preventing them the better.

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