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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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  • rockin_R
    rockin_R sheila91262

    Posted

    Hi there writing from the USA. I'm not sure if I have it or not but I do know that I off of my bed while trying to clean the ceiling fan. I fell off weighing 200 and some odd pounds and hit my rear end so hard it knocked my femur bone lower into the pelvic socket for a few days. I have blue veins all over my rear end some are raised and some are not. I don't physically feel pain from them but I do have one on my leg or sees me on my thigh that hurts and is raised. I do not know hardly anything about this deep vein thrombosis
    • sheila91262
      sheila91262 rockin_R

      Posted

      Hi A thrombosis is the thing to look up on the internet, it is where the blood cells clot together and coagulate which reduces blood flow, it can be dangerous. It may start off looking like a bad bruise but can get worse until it blocks the vein, either minor or major. It would put your mind at rest getting it looked at . The information on her under DVT and thrombosis are good.

      sheila.

  • michelle181170
    michelle181170 sheila91262

    Posted

    hi Sheila ,

     Well its time for an up date on my DVT.... Still not found out why I developed DVT back in December 2015. They  have  at last referred me see radiographer who  specialises in scans of veins and will  operate on the areas which are obviously still blocked . The worst of it is the  extreme swelling i get its worsening all the time They have confirmed that i do have PTS  TOO..... I hope that my next appointment won't take too long in arriving  im still on 18.5 mg warfarin daily   my INR is still  unsettled  as it has been since i began taking it

    take care 

    michelle

  • Marie2287
    Marie2287 sheila91262

    Posted

    Hi Sheila,

    Thank you for sharing your experience, it has given hope for the first time! My partner had DVT after a blood clot 9 months ago and has swelling and pain/cramping ever since and it has had a huge impact on his quality of life. It felt like the emergency treatment was all about immediate relief and prevent fatality (obviously good!) but the follow up was very slow and did not convey the long term risks. I for example did not know they couldn't get rid of the clot itself. He has all the symptoms of PTS (though no ulcers, yet) but no diagnosis. The consultant at the hospital has not given any advice, except take medication and come back in 3 months.

    The lack of patient information has meant he has turned to Dr Google which has been both helpful (we discovered PTS is a thing) but also presents worst case scenario and no real support. Reading about Dr Black gives me hope that something can be done and while I don't want to get hopes up, even if we can get an appointment and speak to someone that recognises the condition and give proper advice and maybe point us in the direction of a support group means it would feel like some progress. I don't want to get hopes up and find out the treatment is not suitable, though hopefully there is progress. I refuse to believe there is nothing that can be done. I have also just discovered Thrombosis UK so I will contact them.

    How your son is doing? Is he now able to run again? 

    How long did it take to get an appointment for Dr Black and was it easy to get a referral via the GP? I am trying to convince my partner to go back to the GP for a new referral but he is so down about everything it is hard, but it was useful to share your experience and it seems quite similar to my partners' in some ways. 

    I think there needs to be more awareness about the condition and the impact on patients, both physically and mentally, so I hope I can help support Thrombosis UK in the future so they can grow and have a bigger impact.  

    • Karinbra
      Karinbra Marie2287

      Posted

      Hi Marie

      Would also say don’t give up hope that things can get better. My daughter’s recovery has now gone on for 2  and half years. During this time she kept wearing her support stocking ( we found some on line which were expensive but very effective) and often elevated her leg at night when it was painful. She started off by swimming and using an elliptical trainer ( as there is less impact) to build up her muscles and encourage the blood to flow through her leg. ( advice from a physio) She also made every effort to walk as much as she could even if her leg was hurting. Over time she was able to go back to playing hockey (bit nerve wracking as she is on blood thinners!!)  and carrying on a normal life. She has more recently been under the care of Doctor Black and her scans reveal that although the blood clot was originally extremely extensive and occlusive ( it went from below her knee to her hip joint) the PTS symptoms have greatly improved over time.  She only notices them now in periods of inactivity so has established that she is better doing a job which keeps her moving so that has changed her outlook a bit. However her latest scans reveal even less scarring after all this time which just shows that any work she does to keep her muscles working efficiently to keep the blood moving round is really beneficial!! 

      So I would say to you and your partner that this is a challenge which you won’t regret taking on when you see the rewards and improvements which you can achieve through keeping active. I am immensely proud that my daughter fought through the pain and fear and frustration because she has made a huge difference to the outcomes she was originally predicted.  And she has now been told that stents may not ever be necessary given how much better she is now. So don’t give up; it is really early days. But get your partner to start moving about and swimming as soon as he can!!

      Good luck and keep us posted. 

      Karin

    • sheila91262
      sheila91262 Marie2287

      Posted

      Hi Marie, I need to make this brief as I am just in such a rush, sorry. He waited for 3 months to see Mr Black's team. They encouraged exercise, wearing compression stockings and leg elevation in the evening. 

      He exercised more and more until his swelling and pain was much reduced. He developed collateral veins which help the blood flow. We thought they would say thats ok you have got so much better so no need for further treatment. However when he saw Mr Black again he diagnosed May Thurner Syndrome and said having stents fitted would reduce his symptoms and improve his long term vascular health. As he was young and sport is his life as well as his job, he went ahead and had the minor ops to fit the 3 stents. He is doing very well, super fit, works 10 hour days and plays loads of sport. 

      Please read my other messages on my notifications as I go into detail about the process. 

      Good luck, sheila.

       

    • sheila91262
      sheila91262 Karinbra

      Posted

      Excellent news Karin, best of luck to you both. I am still one happy, proud Mum.

      Keep up the good work.

  • sandra000028
    sandra000028 sheila91262

    Posted

    Hi Sheila - your discussions have given me some hope for getting help for my son (33) who has a long blood clot in his thigh/groin which was discovered last November following a PE.  Apart from stockings and anti coagulants he has been given no hope of returning to a "normal" live and rarely leaves his flat.  After reading your blogs I contacted the hospital seeking a referral to Mr. Black's team in July/August but he is still waiting to see the vascular team in Southampton to decide whether they think he is a candidate for this type of operation.  How did you get to Mr. Black - was it through the NHS and were you referred there because you were under that Trust?  I intend to pursue the hospital again when I get back next week but it would be good to know if we can request a consultation at Guys & St Thomas as Southampton appear quite uninterested in my son.  I hope your son is continuing to do well

    Kind regards Sandra

    • sheila91262
      sheila91262 sandra000028

      Posted

      Hi Sandra, good to hear from you, similar story really, just shows how much ignorance there is out there about what to do next. Our local hospital was completely unproactive. My son is doing well and is very active and has almost no symptoms.  We found out about Mr Black through the internet and asked our GP for an NHS referral as you have the right to request being seen by other Consultants. It took about 3 months from referral request online until appointment. The first consultation involved scans and blood tests to identify post thrombotic syndrome and May Thurner Syndrome. Lots online about these problems and also about stenting treatment by Mr Black and his team. Still feel grateful that we found this and that he was suitable. Please note it is important to exercise and increase collateral blood flow to alleviate symptoms. Regards Sheila.
    • Karinbra
      Karinbra sandra000028

      Posted

      Hi I would endorse Sheila. It is definitely worth trying to get an appointment for a second opinion with Mr Black. Also just to say that keeping active by doing as much walking and swimming or something like a cross trainer which is low impact is really good! My daughter went to see a physio who told her to work through the pain. She was able to take control and make real progress so that at present Mr Black is not sure stenting is necessary. This was after 2 years recovering from a massive occlusive well-established clot running from her hip to below her knee. Tell your son there is so much he can do to remain strong and improve his life. It is def worth the investment! And don’t give up things do get better. 
    • sheila91262
      sheila91262 Karinbra

      Posted

      Hi All on this post. Son has had his second scan and Consultation of the year and they have said he has had no change at all in his stents so going on to annual checks from now on. We are all delighted as that means no further intervention required. He has a minor crack in one part of his stent but as it has not deteriorated or caused any symptoms he is ok to live with it. We are so lucky as he is still super fit and active and loving life. He has an internal pouch from Ulcerative Colitis which led to the DVT and that is also working perfectly, the only evidence is long scar otherwise you would not know how sick he was. Hope you are all doing well.

      Feeling lucky. Happy Christmas everyone. Sheila.

    • amy38483
      amy38483 sheila91262

      Posted

      Hi Sheila

      This is great news. I am also doing well, I signed up for a marathon in the spring!

      Merry Christmas! 

      Amy

  • Vivi3nne
    Vivi3nne sheila91262

    Posted

    Good  news Sheila!  Glad he is doing so well and thank you for the update!  Merry Christmas to you also smile 
  • Karinbra
    Karinbra sheila91262

    Posted

    Hi Sheila

    Great to hear from you; so glad that things are going so well for Rob. Have a wonderful Christmas and New Year! 

    Karin x

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