post thrombotic syndrome New treatment available.

Hi Jonathan, sorry to hear about your problems. I have spoken to Mr Black, Consultant Vascular Surgeon at Guy's & St Thomas' Hospital London about stenting now and in the past. He has helped to develop this form of stent with the manufacturers, Veniti, so that it is strong, flexible, folds to small injectable mesh for veins. The stent is still a trial and they are tweaking the procedures to reduce the clotting afterwards and so they can site the stents in the groin etc and for them not to move. So it is stent or series of stents but they have learnt alot from the ops over time. The team are having very good results.

Where are you based? You can read about Mr Black on World Thrombosis Day on you tube where he explains and shows slides of the procedure. Rob still doing very well, thank goodness. He is on blood thinners for another few months. Sheila.

I am in the US, in Florida....  I am really happy things have gone so well for your son, it gives me hope.  To live a life without a leg that is blue and 1 1/2 times the size of my other leg, doesnt hurt at random times and not to have to worry about ulcers returning would be life changing!! I am going to do my research on the procedure and home that I can find a doctor in the states that can do the surgery!!  Thank you for the information. Please let me know if there is any other data out there

Hi Jonathan, I will reply in several goes as the moderator takes some out, maybe if someone mentions another search or a product, who knows. Sorry to hear you are still suffering. You had a stent that clotted, was anything done to unclot or re stent? were you on blood thinners? My son had 32 cm of stents in three pieces in his groin to open up vein from the leg. Look back over my previous posts as lots of detail about the procedure.

Hi jonathan. google PTS stenting Mr Black and 5th item is Veniti 21 april 2016 which has technical info about the stent being trialled. Hopefully this should show you the same thing I can see here. It is a World wide trial and they get together in different countries to hold symposia to share results etc.

Hi Jonathan, I post on 2 FaceBook pages where US people post too so might be useful. Thrombosis UK formerly Lifeblood Facebook has lots of info. You could search for that. There is a DVT and May Thurner FB page too. Let me know if you can't find them. There are complications with long term PTS such as calcification of the vein.  

Yes, I had 7 surgeries in 5 days six years ago.  They stinted me from groin to ankle but the older stints just didnt hold.  The new research and results you directed me too look very encouraging.  I am going to speak to my vascular Dr about the options with the new technology and see if I am a good candidate.  Thank you so much for posting your sons progress!!

Hi Hankat, sorry about your bad luck to get a DVT. My son was told to gradually increase his exercising, especially walking and swimming. He exercises a lot, gym, cricket, tennis and running so he did a little more of the same each day, pushed himself a bit as he felt so good. He had been 2 years post DVT so had made progess himself. He was wearing a compression stocking to help with his PTS symtoms, carried on wearing it for a while. Have you been given info about what to watch out for if you get a DVT at the stent site? My son had a small clot develop in his thigh or groin, felt the pain in his leg. He rang the Vasc team and he went in and had it removed by inserting a tube. Really easy. They put him on a second type of anti coagulent for about a week but all was ok after that. He was frequenrly checked by scans until 6 weeks when should be ok as enclosed by vein wall. Keep in touch it will be interesting to know how you get on. Sheila

 

Good news. I meant post stenting clotting as "foreign" body in the vein and can cause a change in flow at the margin and possible clot. That is why G&StT scan about 4 times in first 6 weeks. Knowledge is key. I found my son's treatment online and via FB pages and Thrombosis UK. His hospital not only did not mention thrombolysis but almost immediately  said he would have life changing PTS and not play sport again, inferred would end up in wheel chair. Many tears then, made me determined to find an answer.  Read his story online if you want, DVT wont play sport again. Journalist spoke to him via Thrombosis Uk to get the message out about DVT and stenting. Hosp & GP had no knowledge at all. Useless. Respect for the marathons, son runs for fitness so tends to do sprints and 5Ks.  I feel blessed he is doing well, the end of 2 1/2 pretty grim years. I still post and go on FB to inform people about DVT and treatment as I was so wanting info when he was pre stenting to get some feedback. Keep up the good work. Sheila.

No I wasn't give any information at all on post stenting, what are the symptoms to look for please? I'm a bit worried now! I've read your son's story a few times & am very happy for him & it must give others hope too, so well done you!

Hi Hankat. Don't worry, they should have really given you more post stenting info but you said yourself it wasn't great. My son's stenting is a trial as a new stent and they are tweaking with the protocols. As i said they are scanning to check the stent up to 6 weeks then after 6 months. You have knowledge of what a DVT feels like, a painful swelling in the leg, anywhere, which might lead to a swelling of the lower leg or ankle as the blood acumulates. Get checked straight away if this happens. Being active reduces the likelihood. Caught early will mean quick removal. Have they said when they will check up on you and do you know the name of the stent and the lengths used? Do you feel much difference from before? Remember you are lucky to have the 2 treatments so make the most of it. sheila.

Ive just been looking through my discharge notes & it appears I haven't had a stent fitted. I had so many procedures & they did mention me having a stent fitted but it looks like it didn't happen. I was so drugged up in hospital & I had to also have a hysterectomy that it's only really now when I'm starting to look k to my treatment more.

My notes say ,the left external lilac vein is patent but the left common vein remains occluded. I have a follow up appointment with my consultant in 4 weeks but I may ring him before then & discuss what has been done to me further, I didn't ask an awful lot in hospital as I wasn't googling then & just trustednin the team & assumed I'd make a full recovery (still am) I didn't realisethere could be complications. Oh dear I really need to talk to someone. Is there a page in Facebook I can follow you in?

Ive just been looking through my discharge notes & it appears I haven't had a stent fitted. I had so many procedures & they did mention me having a stent fitted but it looks like it didn't happen. I was so drugged up in hospital & I had to also have a hysterectomy that it's only really now when I'm starting to look k to my treatment more.

My notes say ,the left external lilac vein is patent but the left common vein remains occluded. I have a follow up appointment with my consultant in 4 weeks but I may ring him before then & discuss what has been done to me further, I didn't ask an awful lot in hospital as I wasn't googling then & just trustednin the team & assumed I'd make a full recovery (still am) I didn't realisethere could be complications. Oh dear I really need to talk to someone. Is there a page in Facebook I can follow you in?

Ive just been looking through my discharge notes & it appears I haven't had a stent fitted. I had so many procedures & they did mention me having a stent fitted but it looks like it didn't happen. I was so drugged up in hospital & I had to also have a hysterectomy that it's only really now when I'm starting to look k to my treatment more.

My notes say ,the left external lilac vein is patent but the left common vein remains occluded. I have a follow up appointment with my consultant in 4 weeks but I may ring him before then & discuss what has been done to me further, I didn't ask an awful lot in hospital as I wasn't googling then & just trustednin the team & assumed I'd make a full recovery (still am) I didn't realisethere could be complications. Oh dear I really need to talk to someone. Is there a page in Facebook I can follow you in?

Hi Sheila, is there some other way I can contact you please via a Facebook page maybe? This right is very slow & doesn't always let me post. I'd like to chat further with you

Ive just read my discahrdgdischarge notes & there's no mention of a stent being fitted so it looks like I was wrong & haven't got one after all

I was sure they'd mentioned a stent but I was having so many procedures I must have got it wrong. Is there a Facebook page I could look for you in I'd like to chat a bit further. Thanks

Hi Hankat, you have been through the mill. Thrombosis UK Facebook is a good group to join. Full of info, obviously you have to be selective, it is worldwide so interesting to see what happens elsewhere. It is a closed group so e mail the charity Thrombosi UK & ask to join. 

I was surprised that you said you were stented as it usually up to 1 year after DVT. The body needs to heal and they like to see how much PTS appears, if any. I post on that FB to find out about others being stented and to help others who don't know much about it. The sad thing is that some aren't suitable anymore as their PTS is old and calcified, but new treatments are being developed.

 You are post DVT so you still need to exercise to encourage the body to form collaterals, a little more each day. Good luck. Sheila.

Thanks Sheila. I'm relieved you said they leave it up to a year for stenting as i was starting to panic thinking it would be too late whne I see my consultant in 4 weeks.

I walked 2 miles today & intend going further daily but as I also had to have an hysterectomy 4 days after thrombolysis I have to be a bit more careful with what I do otherwise I'd be trying to run!

Time will tell.nthanks again you've been very helpful in what is quite a scary time.