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

Hi Viv?, Can you bring me up to date about your stent please. How long in size and how long since it was put in? Are you doing ok with everything in terms of symptoms, how often do you need checking and are you on blood thinners?

Thanks so much for joining in on this topic, as you know I first began on here and on the FB page to try and get feedback post stenting so we could learn about the process.

Sheila.

Hi Sheila, sorry for the late response, we moved house and had no internet for a while.  I do not know how long the stent is, it was put in when they were giving me the AnjioJet to wash the clot out last July. The reason I had one was becuase another vein was laying on the vein that got the clot and squashing it slightly, they thought this was one of the reasons the clot formed.  My leg is not too bad, it will never be the same but I have to be grateful for the treatment I had.  I am back walking my three miles a day that I did before I got it, I get pain in my foot when i walk very fast and I have some slight pain in my groin but I think this is more becuase when I sit, I always sit with my leg up.  The only swelling I have now is around my knee, the rest of my leg is not swollen at all.    I am on Warfarin still, its due to be reviewed at the end of this month when they may put me for life on one of the anti coagulants that do not need monitoring.  I am still wearing a stocking, my doctor has advised I wear it for two years.  The AnjioJet should be available to everyone (although some people are not suitable as it can cause a stroke).  It was pure luck I had it, they did not offer it, it was down to a student nurse doing the rounds with the medical doctor, she said she had been reading about it just the day before and the doctor said, oh we have one of those will see if she is suitable for it.  My GP was appalled when I told him that. 

Hi Viv, thanks alot for your reply. It is so good that you are doing so well and hopefully should continue to do so. The clot removal issue makes me so cross as it should be more available and more known about. Down to local knowledge which I think is unacceptable.

Son is now 4 months post stenting and doing brilliantly, fit as can be and no issues. I will continue to be optimistic about his future health as compared to living with PTS it is a massive improvement. He is still on Warfarin but changing soon and staying anti coagulated for a few months yet. Life would have been easier without the DVT but now he is able to live life to the full and that was the aim. If I hadn't found out about the stenting, as it wasn't available locally, then he would still be limited by the pain and swelling. So, feeling lucky. Good luck to all on here.

Sheila.

Hi Sheila and Viv.

So good to hear your good news. When my daughter had her DVT I tried to find out about clot busting but unfortunayrly it is still not being done routinely in the UK. In Washington ( where my brother lives) a study is being carried out into its effectiveness and they are using two systems; the one which you had Viv called angiojet and another system called Trellis. The study link explains " Pharmacomechanical catheter-directed thrombolysis (PCDT) refers to the injection of a clot-busting drug (such as TPA) directly into the blood clot through a specially-designed, catheter-mounted device that may also break up the clot and/or remove the clot fragments. This combined drug-device approach can significantly reduce the amount of drug that needs to be given (which probably improves safety), the treatment time, the length of stay in the intensive care unit, and hospital costs. Several PCDT methods are available but two have sparked particular interest because they can enable clot removal treatment to be completed in a single 2-hour procedure, which is must faster than previous methods which involved 24-48 hours of drug treatment."

I tried in vain to find somebody who could do the procedure here but it was complicated as she was in France when the clot was diagnosed. However it is available as a treatment at St Thomas' because when we were seen by Mr Black he explained that in her case it was too late (there is a fairly tight window of opportunity to get treatment) However a lot of research I is now suggesting that busting the clot has a far better outcome so it is always worth asking about it of your if a DVT is diagnosed in case you are suitable for treatment.

Good luck to all who are dealing with anything similar. And pass on the word re DVTs, PEs so more people are able to help themselves!!

Best wishes to all. Karin x

Hi Karin, thanks for all the interesting info. The clot busting question is difficult to understand as it is available in UK but not routinely so unless you know about it or they tell you about it you are stuffed. I really think that the message should be spread around to the vascular departments especially for the younger DVT sufferers as they will receive long term benefit. If this was done for all suitable patients then the saving of NHS funds would be huge.

We can't go back and change things but I still want to help to inform others about treatments and how to get help.

The Lifeblood charity website doesn't even give info about thrombolysis.

Hope things continue to improve for everyone.

Much positive thoughts for all.

Sheila.

I am glad your son is doing so well now Sheila. 

I also cannot understand why they do not do it more routinely. It took about an hour, no anaesthetic other than a small local one where they cut the back of my leg to get the catheta in and it was completely painless. I think for sure I would have been severely disabled even if I had kept my leg at all as the pulse in my foot was practically non existent. My GP was totally amazed at how well I was so soon after coming out of hospital and how the swelling had gone down.   Just in case it is of help to anyone that comes on this site in the future, I had it done at Stoke Mandeville hospital.

Viv

Thank you for the update Nadine, its amazing isnt it how much better you feel able to cope with things when someone can sit and take the time to explain things for you, its awful when things are not explained.  I am glad you are coping so much better, I really advocate the excercise if you can do it, just take it gradually.  Its really good to know things are moving forward with improved treatment and stents particularly when this awful condition its just shocking that such minor treatments are not more readily available.

 

Hi Nadine

So good to hear that you are feeling more positive and have the possibility for more intervention in the future. I also wish you well with attempts to "get active to get active" as it seems that even if you can increase the amount of walking you do that can make a huge difference. It may seem counterintuitive when you have pain but as my daughter's physio said in her case it really is worth pushing on through if you can!

Good luck with everything and long may you continue to see the very helpful Mr B (not that we have a crush on him or anything!!) lol

Karin 

 

Hi Nadine, looks like you have become a project and not a straight forward one,  but then I don't think you are surprised! Now you are in the system I'm sure they will look after you well. Here's wishing you the best of luck.

Sheila.

Hi All on here, how is everyone doing?

Rob had his 12 month meeting with Mr B and his team and he is doing fine. His results were 97% positive according to the questionaire he fills out for the trial. He is off anti coagulants now. They want to have him in in January to put in a tiny camera to look at his stents in the groin area as his scans have shown that his body when lying down is having an affect on the stent and putting pressure in one part. This is causing compression on the stent and reducing the blood flow so he has a small amount of swelling in his leg. They will decide what to do about this then as they have several options. They have discussed with him the possibility of stretching the stent, reinforcing it or moving it. The surgery is through the vein and just day surgery. Has anyone heard of his?

The last 12 months have flown by! Still feeling lucky.

Sheila.

 

Hi Sheila

Sorry I haven't heard of this I'm afraid.

Have you tried any of the Facebook groups or google groups? I think this is the link for one that has a long history so they might have some answers.

http://www.may-thurnersyndrome.org/join-us/

I'm still waiting for a date. I've been thinking about how little good quality information there is in the media/medical world about the operation, so when I've had the op I might also start tackling this, like you and rob have been doing.

Thanks

Amy

Hi Amy.

Sorry to hear you are still waiting, hopefully you are getting on OK with your own progress.

I write and follow on several FB pages as still want to find out about other' experiences. I write on the Thrombosis UK formerly Lifeblood Charity FB as very good. Also DVT & Post Thrombotic Syndrome aswell as MTS as above. 

In the last 12 months I feel I have asked about 12 questions of various levels of expertise and only had 3 ish answers, so still frustrated. There are some Qs where there are no answers yet as not enough info known esp about trial. eg link between MTS & DVT. Rob was post surgical and had Ulcerative Colitis so if he had been tested for MTS and it was found would they have anti coagulated. Also they are not testing for blood clotting factors before surgery or giving hormonal contraception or pregnancy, so avoidable DVTs are not being seen as a risk.

I still feel for everyone aflicted by clots that there is not enough education about risks and avoidance. I don't understand why joined up thinking isn't being used, is it just cost. My son's stents alone cost nearly £10,000 let alone all the surgery and meds etc. 

I am glad that being male he doesn't have future risks of oral contraception and pregnancy!

His story is written online by a journalist who contacted thrombosis UK to help spread the word about treatment. Search DVT they said I wouldn't play sport again. There is definitely more info out there than 3 years ago when we first started looking and lots of Mr Black's research and even surgery on You tube! 

I think my main annoyance is that they have made lots of progress on Thrombolysis but still not readily available, just luck if you get it. 

Hope things move on quickly for you. Rob being fit and strong again and no disease is all I need to feel positive about his future.

Good luck. Sheila. 

Hi Sheila

I had my procedure under Mr Black at Guys and St Thomas' about 2 months ago and my leg now feels fabulous. I've been walking and running loads and just bought some shorts and skirts for summer as I don't need compression any more. It's not quite the leg I had pre-dvt but I think that's to be expected, and for now I just feel very lucky it's gone so well so far. I hope your son gets some improvement from his slight return of symptoms -as you say he's in good hands. Its thanks to your internet presence I had the good fortune to access the same team as your son and get such a great outcome myself. Thank you for spreading the word.

Thanks

Amy

Hi Amy, Sheila, Viv 

So glad to hear your fantastic progress Amy and also to know that Sheila's post has made a difference to somebody; well done Sheila!! I hope Rob is still doing well. My daughter is due to see Mr Black again this month. I wont be there (which is a bit frustrating) but I know she is in great hands and will be advised of all the possible options available to her. 

So keep up the good work.

Karin x

Hi Amy and Karin. Glad to hear back from you both. Excellent news Amy, so glad you have made improvement and feel able to be more active. Hope all goes well Karin with your daughter and her Consultation. I think I told you that it was Mr Black's diagnosis that Rob's long term venous health was the key to having the minor surgery plus it is quick and quite easy. He will see Mr Black again in April as the camera inside found a small crack but as no reduction in affect then thye didn't do anything else. He is stil super fit and active and he doesn't notice any changes. Still feeling very lucky. Good luck to all. sheila.

Hi All, Rob has had consultation, scan and blood test with Mr B this week. Still no symptoms but he has 3 small cracks in 1 stent which is causing some clogging of the stent. They are checking 3 monthly to make sure the blood is flowing freely. If his clogging increases and reduces the blood flow then they plan to put in a balloon to expand this one stent and put a stent inside that. The cracking is being caused by a physical anomaly in his abdomen where a ligament is tight and puts the stent under pressure. He is told to be as active as before and his mobility is not making any difference. Mr B has found this in only a few patients and he has treated marathon runners who do not have the ligament problem so it is not just about fitness. A little disappointing but not the end of the world as no symptoms. Shame he will prob need another op. He has quite a set of small scars on his neck now!

Good luck to everyone, Sheila.

Hi Sheila

Thanks for keeping us updated and best wishes to Rob for a speedy recovery if he does have to have the op. My daughter has seen both the Haematologist and Mr B and, as things are still manageable, she has decided to stay on blood thinners and have another review next year. She does have symptoms but is staying very active and forcing herself to work through the pain and keep going. While not ideal I also think it's s big step to undertake surgery unless the benefits outweigh the risks which clearly in Rob's case they have done massively. So good luck to you all and will keep you posted !

Best wishes Karin

Good news for your daughter. Thanks for the kind wishes.

It is very pleasing having the confidence that they treat each person individually and are able to give advice based on experience.

Feeling lucky.

Regards sheila.