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DVT or PTS?

Posted , 4 users are following.

kit52186
kit52186

In 2011 I had a knee to pelvis DVT which was put down to 

pregnancy, bed rest and a flight 3 days post partum, I was on 

warfarin for 15 months and since then have had no real problems 

yet the swelling never went down, with the left leg being 1inch 

bigger than the right and slightly discoloured.

In the last few months as it was 4+ years later I stopped wearing 

compression socks as much and my leg started aching more, so I 

bought new ones a few weeks ago which feel tighter than the older ones as they were about 6 months old. However in the last few weeks 

despite wearing them I've still had quite a bit of pain. In 

general unless raised my leg is feeling heavier and quite achy 

compared to the other and on occasion there is a sharp twinge, 

which quickly comes and goes. Once I raise my leg the 

heaviness/aching mostly goes away. I've measured my legs and its 

still the same 1 inch difference so no increase. Is this likely 

to be another DVT or PTS starting?

1 like, 9 replies

9 Replies

  • supercargo
    supercargo kit52186

    Posted

    Best to get it checked out through the route GP / DVT Clinic / Ultasound
  • sheila91262
    sheila91262 kit52186

    Posted

    You should get it checked via GP. But I do think it sounds like PTS. You are long enough down the line now that it means it has healed as much as it is going to, in our experience. You can ask to be referred to a more specialist hospital as I have written about in my posts on DVT, VTE and PTS. There is treatment available after various tests show the extent of the damage. Do get measured for your compression stocking and we know that it doesn't prevent PTS but helps to reduce  the symptoms of swelling and discomfort. There is no harm done by exercising in fact it improves circulation, even if your leg feels heavy, that will be only temporary.

    Good luck to you.

  • Kate500
    Kate500 kit52186

    Posted

    Hi, I am having a similar dilema at the moment. I had a PE 14 years ago following a fractured ankle and had no outward signs of DVT, no swelling etc only a very specific pain/sensations in my leg but at 22 I didn't stand my ground and had a PE. 5 1/2 years ago in my 1st pregnancy it took 3 weeks for me to drag a DVT diagnosis out of my local hospital. I knew immediately that the pains/sensations were the same as 9 years early but after a clear Doppler and again no swelling or discolouration etc I was dismissed over and over again for 3 weeks before finally a supportive GP sent me through A&E for a rescan and I had a groin to calf thrombosis, no surprise to me! By then I was on crutches and could not weight bear on the leg for around a month after. I was never told anything about PTS. 3 weeks ago I got the very same pains/sensations and a sinking feeling. My d'dimers are low, I have had 1 clear doppler but without doubt I have presented myself at the GP 2 weeks earlier than I would have if I had not previously felt these exact pains before. The DVT dept will not see me again, they have a policy of 1 Doppler, even though they missed mine last time, and today I have finally had a progressive appointment with a GP who tried to get me rescanned but had no luck. I am on weekly d'dimers and been referred for possible PTS? But everything I've seen suggests that 5 1/2 years would be a long delay for the PTS to set in, I have never had problems and this is sudden and progressive onset of pain over 3 weeks. Have you been able to get anywhere with your diagnosis yet? Or does anyone have any experience with PTS presenting this late and so suddenly? Thanks
    • kit52186
      kit52186 Kate500

      Posted

      I was sent to the DVT clinic, a d-dimer test was negative so they didn't send me for an ultrasound and diagnosed PTS rolleyes 
    • sheila91262
      sheila91262 kit52186

      Posted

      Hi, Did they suggest what to do next? Or was it a shrug! that's it, don't expect much more. That was our experience more than 1 year ago but we have moved on and have an up to date diagnosis at Guy's & St Thomas Hosp and treatment is available for PTS. Don't give up hope.

      Where are you in the UK?

    • kit52186
      kit52186 sheila91262

      Posted

      Pretty much just a shrug, they told me to get remeasured for new stockings and that was it. 

      I'm in Edinburgh 

    • sheila91262
      sheila91262 kit52186

      Posted

      Hi, You can get referred to a hosp with a more investigative and interventionalist treatment of PTS by your GP . We are in the south east so Guy's in London is the one and it was the first to do stenting and minor vascular surgery for post DVT scarring. We are there in Oct to see Mr Stephen Black and his team with view to stenting. This is my son's 3rd appt and they have done scans and blood tests and he is an ideal candidate, so we will see what happens next. I have been told online that York and manchester have started to follow suit. I don't know about Scotland but I will ask the big Guys when I am there and publish on here. Look online under the names above for more info.

      I have written on here lots about PTS as I was determined to find something to help the swelling, pain and affect on mobility that my son has aquired due to the massive DVT that he developed after abdominal surgery in his local hosp.

      They identified scarring left over after the DVT healed and some valve damage. This leads to swelling that gets worse through the day even though after 20 months he still wears the stocking daily. He has exercised lots which has helped the collaterals to develope and his circulation to improve.

      Be positive, there is help out there.confused

    • sheila91262
      sheila91262 kit52186

      Posted

      Hi, We have been to St Thomas' Hospital today and saw the main Consultant, Mr Black and my son will have a minor operation to place 3 stents to open up his veins in the leg. This will happen soon and my son is thrilled to be a good candidate for this.

      The bad news for you is that they are the only UK hosp to be treating PTS. Nowhere else is ready to go ahead. Long way from Edinburgh, but at least you could have a consultation.

      Good luck.

       

    • sheila91262
      sheila91262

      Posted

      Hi Kit, any progress?

      Son has had stenting op ain his left leg in 3 places to help with the PTS, at Guy's & St Thomas in December. Hopefully should make a big difference to his circulation and swelling.

      Sheila.

       

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