Post thrombotic syndrome. Has anyone had treatment for this?

Hi, I dont have symptoms but my son had a massive dvt in Jan 14. I have spent lots of time in the last 13 months researching and trying to get the latest info on treatment of Post Thrombotic syndrome. He has swelling of his leg and pain so that he has to rest with his leg.He had warfarin for 6 months and he has stockings that he wears often. He has just seen Mr Stephen Black at Guy's and St Thomas hospital who will operate in June to fit a stent in his pelvic vein to hopefully alleviate his symptoms. We have fingers crossed it works. This vascular surgeon has performed this 130 times in a year.

I was hoping to find someone else who may have experienced this so that we can find out how they are getting on.

Hoping to hear from you.

 

Post thrombotic syndrome is a complication after dvt, it is potentially life changing and affects mobility. The message is to avoid dvt rather than treat but our problem was post surgical and we consider the hospital to be negligent.

Hi my son has PTS and May-Thurners syndrome because of surgery and not given blood thinners after he left hospital. A completely avoidable complication which has changed his life.

See my posts on DVT and PTS and VTE which you have commented in, too many details to record again. He is receiving treatment at Guy's and St Thomas Hosp London and hopes to be stented in the vein after his last surgery soon. York and Manchester hospitals are also doing this innovative treatment. Your GP can refer you to any of these, only hosps in UK doing treatment.

How did your DVT and PE come about?

 

Hi Sheila. i hope you and your son are getting along ok? Sorry I have not been on here for a while so did not respond to your last comment. My DVT was in both legs at the same time with an embolism to the lung. The cause of this is still totally unknown. PTS was diagnosed after 6 months due to lack of primary care/advice at GP's level, no compression stockings given till 5 months after initial DVT and only at my asking for them, no clue how to treat me it would seem. I'm now almost 9 months in and PTS is quite bad. I cant go back to work as it was a physical job I had, I'm still quite swollen and feel as if Im getting bigger all the time, although I do go to an assisted gym session and physio once a week. My weight gain is about 3 stone and my quality of life feels like nil at the moment. I cant walk anywhere, cant bend to put my own shoes on properly. Emotionally it is destroying. I have no idea if/how I can treat this. So, yes, a completely avoidable situation has changed my life completely. Apparantly now they have discovered I still have a clot somewhere in the abdomen, but now they cant find it, so back to having scans. Im sick of it all to be truthful.

 

HI Karen, I am sad to hear that you are not progressing very well. Have you asked for a referral to a hospital where they have some good understanding of PTS, a good Vascular team is required?

I don't know where you are but if you can get down to Guy's and St Thomas it might help, they are certainly the ones to give you the upto date, personal advice about your reasons for getting DVT/PE and your PTS. Being given the correct support, both physically and mentally, is key to improving after this life changing condition.

We are both doing well here, my son has had his last operation for his bowel condition which started all this. He is much better now and getting fitter. He was lucky! as he was fit and young before all this so was able to exercise which has improved his PTS symptoms. He took the advice of the consultant at G&ST and wears his compression stocking all day, every day which does reduce the daily swelling. He has an active job too and he definately swells in his leg as the day progresses. He is 19 months past DVT and is still progressing and improving, as they said he would. He was told he would improve over a 2 year period as the extra, minor veins open up to help the blood to flow. He is off to see the good Guys in October when they will discuss stenting.

Have you been advised that swimming is good as it is non weight bearing exercise?

Stay strong and ask lots of question, preferably from the ones who understand!! Your GP can refer you to any NHS hosp.

Good luck and keep in touch.

Hi Sheila. Many thanks for your reply. So glad to hear your son is doing well. What good news, and a bit of inspiration and hope all is not lost. .Haha. Have got docs appointment now so will be asking about referral. Will keep you posted. Thanks again. x

 Hi Karen, How are you progressing? Have you got any answers to your questions? We are down in London soon and hoping for a good result. St Thomas' Hospital is still the only hosp treating Post Thrombotic Syndrome.

Will let you know how we get on.

Good Luck.

Hi Sheila. i havent been on here for a while. i'm doing ok thank you very much. Things haven't improved that much really, but I have to say I'm beginning to see a light at the end of the tunnel emotionally so I think I will now be able to cope with the next lot of stuff. Haha. I will certainly be asking about London this week with my specialist. I do hope it all works out at St Thomas. And yes, please do let me know how it all goes. Take care. x

Hi Karen, good to hear from you. I do hope your symtoms are reducing. We are down in London at St  Ts in 2 weeks and Mr Black will operate to put 3 stents in the left leg vein under general anaesthetic. My son will stay in overnight and be scanned to check the stents are correctly postioned. He will have 2 more scans, at 2 weeks and 6 weeks to check that they are not clogging up. He will be sent home with small injections, including blood thinners to reduce the likelihood of complications.

They are tweaking the treatment using the experience of the previous patients to constantly improve their success. We felt very confident that the treatment will really bring results. Fingers crossed.

As I said they are the only ones in UK treating PTS, so don't get fobbed off with ignorance.

Mr Black explains some of his research and their results on You tube, Thrombosis UK, patients day. Soon there will be clips on You tube of this years World Thrombosis Day.

Will keep in touch, feeling lucky.

Sheila.

Hi Lisa, thanks for the reply. he was diagnosed with May thurner syndrome and Post Thrombotic syndrome when he went to St thomas' London. The MTS is where the artery overlays the vein in the groin and reduces the blood flow away from the foot. The radiology detects the compression, it is an anatomical anomaly that causes higher blood pressure in the veins. He has been stented and his symptoms almost completely gone. He used compression stocking successfully for over a year. He is very active and able to do sport to a high level.  We are very lucky. Hope you get on well too. Thanks sheila.