DVT and Post Thrombotic Syndrome, do you have symptoms and don't know what to do next?

Hi K, I understand how you might feel nervous, I did too. My son had a massive DVT in his left leg and it was life changing. I have written loads on here under DVT and PTS as we were at the beginning of finding out about its impact, its possible treatment and how it would change over time. My son was determined to get back to normal but was hampered by his local general hosp being mostly ignorant after the original Warfarin and compression stocking, then what?

DVT was Jan 14 and we found Mr B and St Thomas in Oct 14. He was told to carry on exercising as it helps circulation and production of colaterals. Even if exercising hurt it wasn't going to hurt long term.

It has worked, my son is an athlete and coach and sport is his life, and even though his leg swells and is painful by evening, his symptoms are reduced. He wears the stocking daily and it helps to reduce the swelling. He elevates his leg when he can to help the venous blood to flow upwards to the heart. We wish we had known then what  we know now. He is prob 60 % better than a year ago in terms of symptoms. Mr B said everything to put us at ease and feel confident about a successful outcome. The stenting in his leg will alleviate his symptoms and mean that his scarring from the DVT wont impact on his future circulation and venous health. That is the point of the treatment, it helps now and improves the outcome for the future. Hope this helps. We feel so much better about life now as i was so angry as his DVT was avoidable and was due to negligence after abdominal surgery. The fact that treatment is available now when he needs it is nothing short of amazing. My son may not have been offered the treatment as not everyone is suitable, but our thoughts were that if it doesn't apply now then it will in the future.

Good luck to you both, I will let you know how he gets on, treatment is due soon but no date yet. He expects to be hosp for one night and be scanned several times in the first 6 weeks. He has been told to expect a small amount of pain in his back after the op and take painkillers. He will take blood thinners for upto a year after the op. All of the investigations so far have been painless. He is actually looking forward to the next stage as he should be cured.

Sheila

Hi Sheila.

Thank you so much for such a long reply! And with so much information. My daughter only had her DVT in June this year so I guess it's early days and we feel very lucky to have found the service now offered at St Thomas. ( through a speculative email I sent to the US!!)

The thing that has come as such a shock after the relief we felt that at least she had not had a PE is that PTS is so very debilitating. Still she also knows exercise helps and am proud of what she has managed to achieve since it all happened.

I wish your son all the best for the procedure and hope that he will get the results he is hoping for. Will keep you posted on what happens with us too.

All the best

Karin

Thanks Karin for your reply, there is a lot to learn as the treatment is so new. I tried really hard to find info from someone who had been through the process and could give us first hand feedback. But we weren't able to find someone, probably as there have only been approx 180 stenting surgeries. Such a steep learning curve.

  As always when you research online you get the whole spectrum of success and fails, which was making me nervous. I found the US were treating with stents too, with variable success but Mr B was able to reassure us that these new stents are developed just for this procedure and are proving to be very good. They have also developed a new protocol to scan in the first 6 weeks to check for the beginning of clotting in the stent itself which is having great results.

We were also relieved about not going to a PE but the negative feedback about his DVT was so difficult to take especially as no one out there could give us any hope of further treatment. My son was told to reduce his exercise as it would damage his vein by the local hospital, so to be told to exercise all he wants and it is doing you good by the experts was great news.

I don't know why it needs to be us to find out info about new treatments, don't they read the BMJ or go to meetings etc, frustrating!

Take care,

Sheila

 

This arterial stent in the leg has always been available it's just that surgeons don't like doing it because sadly a high percentage end up getting blocked again and need second operations so you have to weigh up the pros and cons I've had clotting trouble I had pulmonary embolism they didn't know why as I had no DVT symptoms anyway wishing you all the best .

Hi William

This discussion is about venous stenting of blocked/narrowed scarred deep pelvic veins post DVT, not arterial stenting. Arterial stenting is more common and is generally for people who have poor blood flow to their legs through their arteries - nothing to do with DVT. Venous stents are less common than arterial but seem to be having sucess in acute DVT when combined with removing/breaking down the clot, and have just started to be used in this country for treating post thrombotic syndrome following DVT. Research about its effectiveness is underway but there are certainly some sucess stories. Some people may require re-operation because of blockage/partial blockage as has been discussed on this thread.

Hope this helps

I know three people Sheila that have had this op and it hasnt worked for any of them this is what put me off having it done.

Hi Alexandra, there is a lot of information online now in comparison to 18 months ago when we were first investigating. As I have mentioned our experience is only of Mr Black and his team at St Thomas' Hospital London. He is having very good results with the Veniti stent which is made for purpose and the aftercare reduces the likelihood of clotting. My son is still doing excellently, he is as active as he was pre DVT. He was ideal for stenting as his DVT was relatively new and even though very large it was pretty normal. He was diagnosed with May Thurner syndrome and the stents opened up the compression in the groin and increased the blood flow so no swelling or pain. I have heard of a few patients who have not been stented or who have not been successful as they have complications such as complete occlusion or additional complications. We were led by Mr Black, as he said Rob was ideal candidate and all has gone well. I could not comment on any other Hospital as I have no experience but from my research I would only recommend the Veniti stent. Good luck with your research and decision. Sheila.

I was due to have the op in December but they wanted me to go in hospital in 23rd which I refused so close to Christmas as i have two children at home and didn't want to ruin Christmas.they then rebooked it for february. By which time I saw my vascular surgeon again and he strongly advised against it.not really sure why.I had been seeing his understudy and was him that put me forward for it.so I'm really confused 8 years I have had this now and struggle with normal everday things I had to give up my job because I couldn't cope being on my feet all day its changed my life so much.thanks for your help Sheila x

Forgot to ask you Sheila is your son still taking warfarin I have been on it for 8 years now but iv had a letter to say i have to attend a blood clinic as they want to swap me from warfarin to one of the new medicines naorc or something like that can't quite remember there names which does not require regular blood checks like warfarin.to be honest I'm petrified of changing over to these just wondered if anyone else takes them.I think because they missed my blood clot in the first place and left me at home untreated for five days.I like to know I'm being regularly monitered.

Dont be afraid of changing Alexandra, the new ones are much better than Warfarin, I think anyway. I was changed to Apixaban some months ago and will be taking it for life.  There is no need be monitored with he new drugs and diet does not affect them like it does Warfarin. Its so much easier. You can get on with living your life on the new ones. 

Hi Alexandra, it is a shame for you that you are getting a mixture of advice from your hospital as how can you make up your mind, too confusing. Have you thought about a second opinion? the team under Mr Black are very knowledgeable, some on here are under him too.

My son was on anticoagulants because of a post surgey DVT so not on them for life. He was on Warfarin then Apixaban after stenting for about a year. No side effects and no need for blood tests on the Apixaban so less intrusive and able to have a drink and eat anything. You should be fine. Good luck. Sheila. 

The surgeon I saw who was meant to do the op was very relutant to agree to doing the op on me he said he had a very good success rate but couldnt guarantee that it would work on me.then when I went back to see my own vascular surgeon he said under no circumstances should i ever let anyone do this op on me as he has major concerns over the large varicose veins that have developed on my tummy.and yes it is all very confusing for me.I had to give up my job last year which I loved as i couldn't manage to be on my feet all day life for me sucks at the minute although I feel very lucky to be alive after walking around for five days with something that could easily have killed me.x

Thanks for this advice vivi3nne I have an appointment on the 25th wasn't going to go to this but feel abit better having just looked it all up x

Hi Alexandra, Good luck with the anticoagulants, side effects are pretty rare I've heard and the advantages outweigh the disadvantages. Vascular surgeon Mr Black used to specialise in varicose veins before his stenting and so would be an ideal second opinion. He speaks at the Thrombosis UK meetings and explains about the current treatments. You can watch the discussions online on you tube etc. Sheila.