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post thrombotic syndrome New treatment available.

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sheila91262
sheila91262

Hi I am posting this information as I have been searching for sometime to get some help with my son's post thrombotic syndrome. He had major surgery last DEC 14 and recovered well and had anti coagulation treatment whilst in hospital but after being home for 2 weeks he developed a severe, extensive dvt, from ankle to upper thigh. He now has a swollen leg, cramping pain and discolouration, all the usual symptoms of PTS. We have recently found that Guy's hospital is the only UK NHS hospital which is treating these symptoms with great success. Look online for further info, you are entitled to a second opinion and a referral  via your GP. also see the thrombosis charity Lifeblood as they give advice and info. Good luck and remember research brings new treatments all the time, so if they can't help today they might be able to do more next month. rolleyes

2 likes, 36 replies

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  • christine23464
    christine23464 sheila91262

    Posted

    Hi Shelia, I too have been researching treatments for PTS. My husband has had a similiar experience and his current Doctor is saying there is nothing they can do for him. I am desperate to find something to help elevate his discomfort. Can you please tell me what this treatment is called so i can search for it. We live in Pennsylvania, USA. Thanks
    • sheila91262
      sheila91262 christine23464

      Posted

      Hi Christine, I am on the forum today as I am so thrilled as today my son saw his consultant who is going to treat him for PTS. He said that he is a great candidate for this treatment and it should sort out his symptoms. The treatment is an injectable mesh stent which is injected into the leg and opens up to widen and support the vein to improve blood flow. It is a short operation and has good results, it has only been available in this country for a year as before it was experimental. The vascular surgeons at Guys and St Thomas, London hospital operate on people from all around the world. I think that the US have been part of the symposia to find out about the surgery. If you cant find out on the internet about this in the US you could email Mr Stephen Black at G&T H and ask if anyone in the US is using the treatment. He is the main consultant in UK for this procedure and we were told at our local hospital that there was no treatment so we did our research and found him. He has treated 130 people so far as it is still v new as it was only available from last May.

      Hope this helps. lol

  • mary35299
    mary35299 sheila91262

    Posted

    i have a problem with the after care of people who have had a DVT.

    This is how I see DVT:

    DVT = BLOOD CLOT = DEATH

    This is how doctors see DVT:

    DVT = HEPARIN = WARFARIN = BLOOD TEST = INR = BLOOD TEST = INR......

    I woke up one morning with severe cramp like pain in my left calf in 2012 that did not go away so went to the doctor. Told to go hospital in case it was a DVT. Once there they took blood and said that it was. I was then told to go home and inject myself everyday with heparin and a nurse would call every day to take my blood! I found this to be extremely difficult as I am a baby when it comes to pain and needles. The nurse could not give the injection because of 'Health and Safety'!!! 

    The absolute severe pain lasted for aroun 6 weeks. after the first week I was able to stop the injections and take warfarin. 

    Four years later I am still on warfarin and have to have test my INR roughly every two weeks because it will not stabalise between tests. I also seem to end up in A and E regularlt because any major fluctuation in INR and I am sent to ACU to check it again!!! I have had numerous tests and they cannot say why I had this but it was discovered that I had a previous DVT! In hindsight it was the year before this one and senior doctor at A and E told me it was 'old age and arthritis'! When I went to my GP she said it was a baker's cyst, the pain was similar and lasted about 6 weeks, however about 3 weeks after I went back to work I had difficulty breathing but it went after about 3 hours and I thought nothing more of it. I have constant pain in my ankle and calf and I now have to keep it constantly elevated to get any small relief from pain. Every time I go to my GP (and I have seen more than 1) I am told to check my INR AGAIN!! I have now decided to try for disability as I currently work part time and am a full time student (I am 46 for clarity)and I don't think I can carry on doing this. Whether I will be successful only time will tell. I am sick of needles, tablets and doctors but I was told once that there might be more options for me if I went private!!

    I apologise for ranting on but I have seen a lot of sites about DVT and PTS but they seem to reflect short term after DVT presents and in most cases there is an explanation, I would love to say I was on a long haul flight but I have never been out of the country (and am not likely to now!). Any new treatments would be great as I'm sure regular blood tests are not everyones favourite cup of tea!

    It does give me hope that maybe the long term prognosis of stents is the answer.

    • sheila91262
      sheila91262 mary35299

      Posted

      Hi Mary, no need to apologise for rant, been there in similar ways. Docs imply, DVT, bad luck, take Heparin and Warfarin, aren't you lucky you didn't get a PE and nearly die! If you have had blood tests and no underlying blood problem then hopefully you won't get more but they are obviously worried enough about you to want you to stay on blood thinners. Have they offered you Rivaroxaban which doesn't work in the same way so you don't need blood tests and INR checking? Also Warfarin can be affected by your diet such as greens so INR can fluctuate. 

      My son was in 2 weeks after DVT as it was so massive, from ankle to abdomen, so the injection bit and going onto Warfarin and physio for his leg was all taken care of in there. He has had to take Heparin since as he has had abdominal surgery and he has injected, not easy, especially after a while when the body gets sore.

      I can only recommend to you to get a referral to Guy's and St Thomas hosp London to get an upto date Vascular assessment and they will scan inside the veins and find out why you had DVT and where and why you are swelling. My son had swelling in his left leg after the DVT had healed and wore a compression stocking from GP, properly measured etc, and exercised to help his venous circulation. He was told by original hosp don't exercise as bad for you to swell more. When he was referred to G&StT they said wear stocking, exercise all you can as you are encouraging collateral veins to get bigger and help circulation so less swelling and pain. He wore stocking, hit the gym and ran and he was much better but did have his leg up in the evening. Swelling was better in the morning. We did the research that got us there and we were so pleased to get the right advice and be told that he was a good candidate for stenting. He was also diagnosed as having MTS, May Thurner syndrome which hadn't heard of and the compression of his vein in the groin by his artery was the reason he was so swollen in his left leg as well as the PTS.

      He had the stents fitted in Dec and he is so delighted with the results, you may have read on a different post. Mr Black at St Thomas' and his team were brilliant. He has had several visits to London to check results and doing v well. Very little pain and on warfarin again for a few months. The treatment isn't suitable for everyone but they assess and advice. Also they are still developing new treatments so our attitude was if not now then maybe later!

      Ask me anything you like as it has been a difficult journey as so little was known and we were told no cure, no treatment just put up with the PTS. I want to spread the word as there is still a lot of ignorance out there.

      Good luck, Sheila

    • karen62535
      karen62535 mary35299

      Posted

      Hi Mary. My bilateral DVT'S & PE were also found to have no cause. That was a year and a half ago. I have not had a stent but want to reassure you, it does get more bearable. Ask your doctor to change anti coagulants. I was on Rivaroxiban for a while but had a slight allergy that caused me to itch quite badly, so have now changed to Dabigitran. All seems ok with this so far. These are more modern tablets and you don't have to keep going for tests. Once you have this sorted, it may stabalise you beter to deal with th eother stuff. It is a long haul and very frustrating when you don't know what caused it. After a year and a half, I'm still attending hospital for tests, but life does get easier. I do still get pain, and I've got Post Thrombotic Syndrome so I have to wear compression stocking every day and do experience somer pain and swelling, but it gets more manageable and less scary I think as time goes on. Good luck with it all.

    • robert85452
      robert85452 mary35299

      Posted

      Hi Mary,

      I don't know if you are still taking warfarin but if I were you I would look for alternatives because there is plenty of medical research to shop that is causes venous calicification, which is obviously going to make our blood circulatory problems worse. I was on warfarin for 4 years and then read several medical papers about the warfarin/ calcification link.

      I showed them to my doctor and he was shocked because he knew nothing about this research. He put me on bio aspirin instead and I've been in it for 3 years now and do feel a lot healthier. I will never switch back to warfarin; if you do a search you will find lots of evidence showing what I mention above.

  • mary35299
    mary35299 sheila91262

    Posted

    Thanks for the reassurance. I find it quite fancinating to hear the improvements that the stent has done and I will be mentioning to my doc at the next visit. He is lucky to have a mum like you. I have tried various things to keep my INR regular. For 2 years I was living on my own as my daughter was away in Uni so maybe my diet wasn't as good as it should have been. Then she moved back! It was like the roles had been reversed she wanted to take care of my diet and everything!! We've always joked that I need a carer! I must mention as well that I have smoked for a very long time and I realise that this could also be a factor however I have given up about 3 months ago and this where things have got a lot more painful! I think when I was smoking I would have another cigarette to 'forget' about the pain whereas now maybe I notice it a lot more! I have also had 2 compression stockings fitted but they are so painful. I have tried to perservere with these but ouch!! Is your son back to being as he was before this? Has it affected him in other ways? How have you dealt with this?
    • sheila91262
      sheila91262 mary35299

      Posted

      Hi Mary, The current stenting is a trial as the Consultant, Mr Black, developed the stent with the manufacturers so that it is made especially for the veins. They are very strong but also flexible and crush resistant and become part of the vein wall over time. Also the protocols are being trialled as in the past the stents have become blocked by clots and not really successful everywhere. Son had ultrasound scans several times after op and he was blood thinned but still got a small clot on margin of stent and was given a second bld thner but now fine. 

      He is super fit again as can be active again without the pain and swelling. I am very proud he persevered to get his life back again. He was never nervous about clotting again and has no probs with warfarin so he feels lucky that the treatment was available to him now when he needs it! I had some counselling through Gp as I struggled with the whole process as he developed Ulcerative Colitis at 27 which was massively life changing and led to 3 serious ops and in  the negligent post op period got the DVT. Made me want to scream but I put my energy into researching and was so pleased with the great outcome. Hopefully the future should be that he is cured by the stenting and they should last for ever!!

      Good luch, Sheila.

       

  • rebecca77726
    rebecca77726 sheila91262

    Posted

    I had DVT at 22. Ive got Factor 2 which causes excess prothrombin which causes clots. Been on and off blood thinners for yrs. Two yrs ago started having major problems. Major pain in both legs, short of breathe, exhausted, etc. because no clots were found in either leg (my old clot was n my groin and never completely dissolved). after 1 1/2 yrs going to drs went back for another ultra sound and they looked above my groin (hadnt done tha in the past) because I told them I thought my circulation was being cut off when I was sitting. my illian vein and common femoral vein (the major veins) was 100% blocked on one side and 80% on the other. I'm very active (or was 2 yrs ago when all this started) not much over 100 pds, don't smoke and eat healthy. My legs werent even swollen. My point to you to help your son is that being active is very helpful. I can't imagine how much worse this would have been if I had not been. I did develop very good collaterals because of this. I also had  stent put in on the side that was 80% blocked. the other side that is 100% blocked, they were unable to break through (these are blocked by old clots and scar tissue so it's like cement) they tired going in behind my knee and in my neck. My cardiovascular surgeon and my hematologist tell me I will need my blood thinners for the rest of my life. I am 44. I would hate if your son came off the blood thinners only after 6 months. Every situation is different but I wish they had never taken me off blood thinners, maybe this would not have happened. this causes me a great deal of pain and I get tired a lot. I'm not able to be as active or do a lot of things I wish I could. I hope everything works out for your son!

  • karen62535
    karen62535 sheila91262

    Posted

    Hi Sheila. Just a quick message as Ive not been on here for a while. How is your son doing?
    • sheila91262
      sheila91262 karen62535

      Posted

      Hi Karen & Rebecca, glad to hear from you. My son is great, 6 months scan down and all perfect and is active and flexible as beforesmile. He is so lucky that the treatment is available now and worked for him. I send Mr Black as many as I can so I still post on here and on several FB pages. Information about stents is still not easily available and even GPs are not aware.  

      How are things with you, hopefully some progress. Let me know. Good luck, sheila.

    • sheila91262
      sheila91262

      Posted

      Hi All on here, my son had a journalist contact him to write about his problems with UC and DVT and to help spread the word about treatment using stents. It is only online at the moment. You can read about it if you want, type Kirsty English never play sport again into your search. Hope everyone is doing well. sheila.
    • karen62535
      karen62535 sheila91262

      Posted

      Hi . What fantastic news about your son. It must be such a relief for him and you too, oh I am pleased. I'm doing ok. Still very slow and ever fat which makes me cry, but thats a vanity thing. The pain has subsided somewhat and things are ticking along, although very slow. I look back and realise I feel much better than this time lasdt year so it must be slowly getting there. Im so pleased for your son. Will have a read about the stents. x

    • sheila91262
      sheila91262 karen62535

      Posted

      Hi Karen, thanks for your reply, glad to hear you are making progress. Sometimes time is a big healer, keep moving and hopefully things will carry on improving. Sheila.
    • karen62535
      karen62535 sheila91262

      Posted

      Thanks Sheila. And do keep us informed on how your son is doing. x
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