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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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  • Karinbra
    Karinbra sheila91262

    Posted

    Hi 

    This sounds so familiar Sheila. I was actually looking for information on whether my daughter's clot could be dissolved and it seems there is lots of research to suggest if this can be done in the early stages and safely (as of course there are risks from bits of the clot being loosened) then the prognosis is so much better. 

    We too were very taken aback by the lack of help (although it didn't help that we were in France!) but are happier now that we seem to be under the very best of care with an expert department totally committed to dealing with the after effects of clots. Bearing in mind the years our children still have ahead of them (and the potential drain on resources and limiting factors to their own lives) I think this is an absolutely vital service and am so grateful to be even offered our first appointment.

    Will keep you posted and hopefully others will see this thread and think of finding help if they are sufferirng.

    Karin 

    • sheila91262
      sheila91262 Karinbra

      Posted

      Hi K,  Going down to London on 23/11, for stenting op, fingers crossed.

      Hope you get good news too. I have contacted this website to ask them to look into the treatment at St Ts to include in their patient information, will watch carefully. Even Mr B said hospitals are not good at sharing!

      Sheila

    • Karinbra
      Karinbra sheila91262

      Posted

      Very best of luck and good wishes for the day. We arriving on 24th so may even bump into you!

      Kx

    • sheila91262
      sheila91262 Karinbra

      Posted

      Hi K, good news, wish you well. Might get to have a coffee!

      Sheila

  • Fairynuf8
    Fairynuf8 sheila91262

    Posted

    Great to see this thread, thank you. DVT couple of weeks ago, been on crutches with a damaged shoulder. Asked about general flexing exercises, told NO as clot could break off, 2 weeks later now a stocking but when I asked about exercises etc told a little exercise but not much. No general guidance, had to ask how long the stocking is for and told 2 years. Shock. Nope, cant wear that in the summer as I overheat anyway rom a heart disorder. No appt until end of January, just constant Warfarin adjustment every couple of days. Am trying to get to see GP .. ho hum .. feeling frustrated and miserable :-(  
    • sheila91262
      sheila91262 Fairynuf8

      Posted

      Hi, sorry for your news. Where is your DVT and how extensive is it?. My son was in hospital after going to A&E with huge DVT for 14 days and had physio which mainly involved walking and beginning to climb stairs.He was given compression stockings then and told to use them daily. He was told to start exercising  slowly and begin to exercise more each day. By the time we knew about treatment and could get a referral to St Thomas' hospital he  had been healing for 9 months. He has fewer Post Thrombotic Syndrome symptoms now but it still effects his life. His stockings, which he gets remeasured for and prescribed, are relaced about 4 to 6 monthly. Mr Black at St Thomas' has said that the stockings do not stop PTS from developing but they do help to reduce the swelling by the end of the day. When it was hot during the summer my son would leave them off for about 3 hours but he swelled more by evening. However by morning the swelling had reduced and no long term effect. He was told 2 years is good as the healing of the vein is as good as it gets by then.

      You may not develop any further symptoms such as PTS, not everyone does. So you may find that your body heals the DVT and you get back to normal quite quickly and can exercise as usual. When you get to see someone you can ask about travel and avoiding being immobile to avoid another clot. We have been told that if you have had a DVT you are more likely to get a second one than the average person even if you havent got an underlying blood cotting problem such as sticky blood.

      Hope you feel better soon, Good Luck.

      Sheila

  • Fairynuf8
    Fairynuf8 sheila91262

    Posted

    Really helpful, Sheila, thank you. I've already had a PE donkeys years ago, and have cardiomyopathy too. I've had quite a sedentary year one way or another, plus a lengthy virus and steroids just before the DVT. Feeling sorry for mself, and that's not helped by the casual attitude and routinely selective deafness of hospital staff. So, it's great to have your contribution to enable my own weighing-up process. I was given a video to watch on taking my warfarin properly, but nothing from anywhere about the condition and my prognosis. I'm sure my heart hospital will be on the ball when I can get there. I hope everything improves well your end.
    • sheila91262
      sheila91262 Fairynuf8

      Posted

      The NHS choices and the information sheet on here are both good. The charity Thrombosis UK is useful too and they have a facebook page. The annual World Thrombosis Day was held on Oct 13 and they have videos showing their discussions for 2014 and some are ready for 2015 on You Tube. They are very informative but you can be selective about what you watch!

      It is a recognised but often ignored consequence of DVT and PE that patients  suffer anxiety and depression after being diagnosed. If only the medical profession were better at treating the whole person not just a set of symptoms.

      Rant! but it is true!

    • nadine06518
      nadine06518 sheila91262

      Posted

      Hi Sheila, I just logged in to let you know my news and saw your son is booked in soon for op! Fantastic! Hopefully soon he will be pain free.  All the very best to you I will be thinking of you

      both.  I saw Mr Black again today really expecting that he wouldn't be able to do anything but he can! So incredibly happy and grateful. He says MRV shows I have May Thurner Syndrome and he can place a stent.  I just had my pre op assessment and am still reeling from the shock that I might get relief from this pain. He is just amazing and I feel so lucky.  I had resigned myself to pain management and stockings for the rest of my life just so that I could just move on. Now I feel like I potentially get my life back. But definitely with greater appreciation and self awareness.  He has revived my faith in the NHS somewhat, really inspiring, proper NHS hero.  Good luck Sheila and son! All the very best, nadine

    • sheila91262
      sheila91262 nadine06518

      Posted

      Hi Nadine, I am so delighted for you, such a relief. We hope for the best but fear the worst! so to get the best news is great.

      Only when you or a loved one goes through such a difficult time medically can you appreciate what good, or Fantastic!, news can do for your morale. I agree with everything you said about Mr B and his team, "he had me at hello"!!! Such a pioneer and so caring and deeply aware that he is treating the whole person.

      We have been through a short but very testing time and to be under their care is overwhelming.

      You may already know but my son had a stoma after having his diseased colon was removed after developing severe Ulcerative colitis 2 years ago. In July he had the op reversed and an internal pouch formed so he uses the toilet in the normal way. The specialist hosp was so marvellous and so different from the previous general hosp that we were ready to believe in the NHS again. So to get 2 pieces of good news makes us feel very lucky.

      I am nervous about next Tuesday as we have a lot riding on it, and it was me who found out about the treatment!, but I also feel confident that they will do their best and all will be well.

      I will let people know how it goes, fingers crossed. Thnaks for your best wishes.

      Sheila

    • nadine06518
      nadine06518 sheila91262

      Posted

      Thanks Sheila, your poor son has had a dreadful experience, so very happy for him that he is on the way to recovering.  He has had a lot to deal with.   hearing your news  and progress is so encouraging and makes this all less of a lonely journey.  And it s great to be able to share anxieties and celebrations.  My parents live abroad so I try not to worry them too much and my husband at first  struggled to accept that life was essentially going down the plan B route. He is now really supportive but we had only been married a year when this struck and it was very testing to have to face adversity so early on.  In fact it almost broke me as I felt my life and work and marriage literally fall apart.  I had always been so in control of every aspect of my life and suddenly everything got turned upside down. Especially as my dvt was unprovoked and seemed to come out of nowhere and every specialist told me I d just have to grin and bear it.  Some part of me felt it was my fault somehow, that I had brought this upon myself by burning myself out at work, so having a diagnosis of MTS has helped me to come to terms with it at last.  And my husband has definitely changed for the better!  

      Look forward to hearing good news from you soon!

      lots and lots of good wishes

      nadine

  • Fairynuf8
    Fairynuf8 sheila91262

    Posted

    Oops sorry, forgot to reply to you on this bit, the clotting I'm told is within the calf muscle and travelling upwards.
  • Fairynuf8
    Fairynuf8 sheila91262

    Posted

    Great links, thanks again Sheila. Yes, if someone could respectfully and cohesively join the dots with my body shenanigans I would feel better, and could then send various symptoms to the naughty step. Rant approved and seconded.
  • Vivi3nne
    Vivi3nne sheila91262

    Posted

    I was admitted into Stoke Mandeville in June with a DVT extending from my knee, through my groin and into my abdomen and my entire leg was badly swollen. Under a local anaesthetic I had the clot busting vein wash and a stent fitted where the vein was slightly squashed.  I was in hospital for two weeks and a week after I got home my leg was only 1cm swollen. I excercised gradually and now walk 2 to 3 miles a day. Scans now show no sign on the DVT and good blood flow in both directions, my consultant has discharged me and said I can start leaving off the compression stocking. Good luck to your son, I hope they start offering this treatment more regularly. 
    • sheila91262
      sheila91262 Vivi3nne

      Posted

      Hi, so glad to hear you news about the post DVT recovery and treatment. You were so lucky to receive thrombolysis, clot busting therapy, it is not readily available. In fact I would like to know how many hospitals offer it, as they need to have the trained staff and specialist equipment. We would not be where we are now if this had been used but I know it wasn't available there, but I think it should have been mentioned and we could have gone to the specialists to have treatment. I have been told it is best to have the clot removed before two days have gone by.

      My son's DVT was so large they said it was one of the most extensive they had ever seen, that is why his PTS is so damaging. At least now he will have the operation and the stents will reduce the damage to his circulation.

      Were you on blood thinners after your stenting?

      The treatment using stents is more aggressive at St Thomas'  than at other hospitals and will be used to treat more damaged veins. I know that some patients have been helped where they had been told there was nothing that could be done. We are lucky that this is available now when it is needed. I hope others get to know about it. We can't rely on the Doctors knowing about all the innovative new treatments.

      Good luck to you and keep up the walking. Sheila.

    • Vivi3nne
      Vivi3nne sheila91262

      Posted

      Hi Sheila,  they said my clot was one of the largest they had seen, my leg was extremely swollen and the pulse was weak in my foot.  The clot was at least 2 weeks old when I had the treatment, I had been ill for a week before I was admitted to hospital and I had been in hospital almost a week before it was carried out.  The stent was because the vein was being squashed slightly by another vein resting on it.  I put my recovery down a lot to my being able to exercise so early after the DVT which of course was because the clot had been removed, I was not able to walk before it was removed or for a while after but within a few weeks I was back to getting my normal 2 - 3 miles a day walk.   My GP was amazed when I visited his surgery a few days after I came out of hospital.  I am taking Warfarin, my consultant has recommended I continue it for the full six months and then possibly go on to one of the newer anticoagulants that do not need monitoring, he also suggested I have checks to see why I had the DVT in the first place as I was pretty active.  I am 61 BTW.  Yes, this clot buster should be available more but not everyone is suitable for it evidently and it can have devastating side effects. 
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