1. Community
  2. Blood & Immune System
  3. Deep Vein Thrombosis

Calf pain 1 Year on?!

Posted , 9 users are following.

ben9813
ben9813

Hello all,

Back in March 2013 after a long haul flight I was diagnosed with a dvt above my calf just below the knee.

I was 29 at the time, relatively fit but was overweight and stuck in cabin class.

Was put on warfarin for about 7 months.

Since the dvt and still to now, the leg hasn't felt the same or felt right. The leg feels week and often heavy. It often aches, especially at night.

I get a strange, fluttering/bubbling feeling deep in the leg often. Which is hard to describe. Often feels close to cramping up and painful.

If I have been couching or kneeling in the day the pain etc is a lot worse later on.

I need to be fairly fit and active for my work, but am struggling.

I've been to the doctors recently and after looking at the leg, she says she thinks it NOT a case of post thrombotic syndrome. As I don't have swelling and circulations ok.

If not PTS then WHAT CAN IT BE??

I hope this question makes sense and I appreciate any help an answers.

Thanks for reading.

Ben

0 likes, 11 replies

11 Replies

  • Monkeygirl15
    Monkeygirl15 ben9813

    Posted

    Hey! I also had a dvt 3 weeks ago and i have pain all the time...it doesn't go away. I also have pain in the other leg even if the echo says that I have no dvt in that leg.....don't know what to do ???????
  • jane32999
    jane32999 ben9813

    Posted

    Hi, just read your post so joined the forum so as I could reply! 

    I had a DVT in Oct 2013 was on warfarin for 6 months , then nothing. In the leg I had the DVT it always feels different now, in bed it feels very strange, numb , dead, bubbly  etc. I always feel anxious that I will get another DVT. Have been back to hospital twice  now, once for scan which said I have thrombophebitis so have a course of clexane again. I wear compression stockings all the time and walk around 10000 steps a day. Lost about 2 stones as well. Hope some of that is helpful to you. 

    • ben9813
      ben9813 jane32999

      Posted

      I've since been too see a vascular surgeon and he confirmed that I in fact did have PTS in my leg.

      So my advise is don't always take the doctors first impression. 

      I've still got pains etc but a least I no what is going on.

      Cheers Ben 

    • kristi17381
      kristi17381 ben9813

      Posted

      I am approximately 7 weeks out and been told by one physician I could have PTS. Can you advise how you have dealt with the ongoing pain? I am in physical therapy and it hurts as well as any other exercise does . This is slowly making me depressed so any advice is appreciated! 
    • sheila91262
      sheila91262 ben9813

      Posted

      Hi Ben and anyone else suffering with post thrombotic syndrome.

      Moving on from my last post my son has had several scans and tests at Guys and St thomas Hosp London and attended Mr Stephen Black's clinic last week and is delighted to be told that he is an excellent candidate for stenting. He will have the simple op in June which involves injecting the leg with the stent and it will be sighted in the pelvis where scarring in the vein in causing the swelling lower down. It will hopefully remove the pain and swelling by opening up the vein and increasing blood flow. He will need to be on Warfarin for 1 year after.

      Hope this is helpful as it took us a year to get this far as there is v little info out there. This is a new procedure and mr Black has done 130 so far and this is the only clinic in UK to do this. Let me know how you get on.on

  • sheila91262
    sheila91262 ben9813

    Posted

    Hi my son developed a dvt post surgery for Inflammatory bowel disease. He has developed Post thrombotic syndrome from ankle to top of thigh. He has the usual symptoms especially if he is on his feet all day. We have found that the charity lifeblood is very useful for info. There is now treatment on the NHS which is showing great results which helps to reduce the symptoms. Guys hosp in London is the primary research and treatment clinic for vascular problems. You can get a referral from your GP, lots of info on line. He had been told at the local hosp that there was no further treatment and that the symptoms would only get worse! hope this helpful, we are going to London in 2 weeks and hope he will be accepted for treatment. Good luck and never give up hope.
  • jen55592
    jen55592 ben9813

    Posted

    Hi Ben,

                   I am in the exact same position you were in when you wrote this 11 months ago. I have calf Dvt with continued pain no swelling ..... Was hoping you could give update now that you are at the 2 year mark... Have things improved at all? Thank you in advance,

                                                               Jen

  • jen55592
    jen55592 ben9813

    Posted

    Also Ben, what vein was your Dvt in? Popliteal? Posterior tib?
    • sheila91262
      sheila91262 jen55592

      Posted

      Hi Jen, Have you made any progress? What did you think of the info from my post? The letter we received recently from the hospital said the swelling in the leg is due to May Thurners syndrome in the groin. Lots of info online, also the charity Lifeblood is v useful.

      Hope you get help soon.

  • jen55592
    jen55592 ben9813

    Posted

    Hi sheila,

                    Thanks for asking, I'm still struggling with daily pain. I recently purchased the venowave and it does provide some relief but I hope to not need it forever!

                     I hope your son gets the relief he needs with the stent. It certainly sounds like it is promising if they know the May turners is causing too much compressing. I've has an MRV of the pelvis and it looks ok...it doesn't seem like there is anything they can do for me at this point... Going to try to keep moving as much as possible.. Hoping I build some better collaterals for improved venous outflow. Best of luck to your son.

    • sheila91262
      sheila91262 jen55592

      Posted

      Hi Jen and all in this discussion. My son had his stenting operation in December at St Thomas' London. He had the op by needle in his leg with a general anaesthetic, just overnight in Hosp. He was fine afterwards just a small backache, put on blood thinners and sent home to exercise carefully. He had 3 stents as his vein scarring was very bad and he also had MTS. He is now about 9 weeks in and doing very well, able to exercise as much as he wants and no pain or swelling. Long may it last! He will take Warfarin for about 6 months. 

      He has been to London for several scans and blood tests and he had a small clot in 1 stent but it was removed and all was well. 

      It is still a trial and UCL hospital is also doing the same op. 

      Let us know how you are getting on.

      Sheila.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.