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

Hi Amy, So glad to hear from you and that you are making progress. I was going to be in touch today as Rob has had 6 week scan and blood tests and all is good. He will have another scan in March. He has been running and has no pain or swelling. There is no plan to cycle but he has not been given a date for that. He still wears a stocking as being a sports coach he is active all day but as soon as  the weather improves I'm sure he will ditch with pleasure, if not before.

I am so glad you are seeing Mr B and his team, fingers crossed that you will get all the answers you need. 

This is a long journey we have been on and we are grateful that things have improved so far and hopefully he will continue to do so. When you are told that's it there is nothing that can be done to improve things then it is so difficult to live with and so damaging in every way that to have pioneering treatment that is available now is quite amazing. We have a saying that we use now whenever we get good news,  with the J pouch surgery too, Onwards and Upwards!!

Good Luck to All.

Sheila.

Hi Karin, How are things going?

Rob has been for a scan and seen Mr Black today as a check up of progress after about 13 weeks post stenting. All is good, no blockage of stents and blood flow is great. Mr B pleased that pain is gone and swelling very much reduced. Rob has been on 6 mile runs and his legs are more or less the same as each other afterwards. He will have the next check up in 3 months. Still on Warfarin until then. 

So pleased to be feeding this back to you now, 2 years and 3 months after DVT and PTS and MTS diagnosis. 

Good Luck to all. Sheila.

Hi Sheila

So nice to hear the good news about Rob and that things are going so well for him. We have had an appointment with the haematologist and are awaiting results to see if there is anything that could have caused the DVT. Until then and while my daughter is still coping well with PTS symptoms we are delaying any decision as she has done well through exercise and really just getting on with life at uni.

You must feel very proud of where you

are now after such a difficult time and I'm sure your perseverance and support for Rob has been invaluable to him.

I always like seeing your posts as it Is so invaluable to have information when experiencing the trials and tribulations of DVTs PEs and PTS. Hope you keep it up! 👍😊

With all my best wishes. Karin x

Thankyou for your good wishes. It is a journey that we have been on and are still on. I feel so pleased that things are going well. We are both happy and confident to let the medical experts at G&StT make the decisions. He had improved quite considerably through exercise and over time so I was quite sure they would say delay but they said he was a prime candidate and his long term health would be better. He asked Mr Black about the length of time the stents would last etc but as there is very little evidence and these new stents are on trial there is nothing that can be said. I do have every confidence in the procedure and care. So we will see. I hope your daughter has the best possible outcome from her tests etc. 

Wishing everyone well, regards Sheila.

Hi Nadine, I wish you all the best of luck. I am sure you will be fine as you are under the best of care. I have said it before but it feels good saying it, they tailor the treatment to each person's needs, they will stent how much and where it is needed, no more no less. Rob now goes on 6 mile runs and lifts weighs etc at the gym with no problems, so good to say that. He is as mobile and flexible as ever. He built up his exercise levels over the weeks since stenting. The MTS was his main source of symptoms and the 3 stents are doing a great job at opening and supporting the vein and his circulation is so improved. As the stents are flexble they don 't reduce his movement and do no damage to the surrounding tissue. 

Enough about him, go forward with confidence, be patient afterwards and listen to your body about how much you do. They will take good care of you.

Regards sheila.

Nadine

Just wanted to wish you all the best for tomorrow. We will be thinking of you. And I am sure jitters are very common!!!

Hopefully you will see the benefits that this treatment offers and your recovery goes well.

Karin x

Best of luck nadine. I'm sure we will all be thinking of you tomorrow. I have appointment on Tuesday in London (the day after moving house!) but I'm sure you will be home and recovering well by then xx

Hi everyone!!!!

Thanks so very much for all your wishes and support it means a lot and has given me strength!!  This forum has been a godsend! So great to hear how well Rob has done and I just hope it goes OK tomorrow - definitely feeling stronger.  Will keep everybody updated and thanks so very much for all your kindness!

Best wishes to all,

Nadine xx

Hello to all,

Just wanted to update everybody who has been so supportive - my surgery got cancelled!  We turned up last Thursday to find that there was an electrical supply problem in the theatre, and as it's the only one in St Thomas' trust with the necessary equipment they sent us all home at 2pm after repeated attempts to get things going.  Rescheduled for this coming Thursday 24th now, so having to psych myself up for it again, but this time I feel a lot more resolved.  Sitting there for hours, my leg cramping and aching from sitting for so long, i realised that this is no way to lead my life if there is an alternative. It was also great to meet the other 5 PTS patients and talk to others who just understood.  I owe Sheila a great deal as I realised this was a possibility after Rob's op was cancelled (albeit for a different reason), and so I'd made sure my parents (who live abroad) hadn't booked flights until after the op was due!  They had now been able to reschedule so they're here over Easter.  Thanks Sheila! The stent is going through an incision in the groin and the op should last about 30 mins.  I was concerned about how i'd know if the stent  had closed up or formed clots, but apparantly I 'd feel feel significant pain so would know to seek medical advice, and they can do a re-angioplasty if the stent does close.  Still feeling a bit anxious but definitely more positive about getting it done now.  I'll let you know how it goes!  

Amy hope the appointemnt (and house move) goes well!

Best wishes to all,

Nadine

Hi Nadine just read this and so disappointed for you. All I can say is darn!

I hope they tried turning it off and turning it on again! 

Will be thinking of you on Thursday so you can start soon on your recovery, loads of positive thought coming your way.

Regards Sheila.

Hi Nadine

Just wanted to wish you the vey best for today. Hope all goes well and keep us posted!!

Best wishes

Karin x

Hi Nadine, hope all is well and you at home counting your chocolate eggs!

Sheila.

HI Sheila and everyone, really sorry I haven't been on the forum for a while as it's been (I've been)  a bit crazy lately.  I had the venoplasty day before Good Friday expecting that they'd put the stent in too (that was the plan) and as I was coming round from the anaesthetic I heard the nurses in recovery room saying I hadn't been stented, so got very upset, prob the result of all the drugs as well, couldn't stop crying!  Also my life in general is sort of stuck (plans for moving job and baby all on hold) so  there was a lot of other stuff going on in me.  Saw one of Mr B's colleagues as he was still in surgery and he explained that the MTS narrowing was very short and remaining vein too large for the stent and so the stent would have been so short that there would have been a risk of stent migration - definitely not good idea.  I always knew there was a chance that the venoplasty wouldn't lead to stenting - they don't really know the situation until they get in there.   Was a bit painful but not too bad, until a few days later it got a lot worse - went back to A and E after speaking to the vascular nurse as I was terrified I had another clot (I'm not on anticoag) and they were really so amazing - really reassured me with scans etc that the pain was just same old PTS that had been aggravated by venoplasty.  The vascular team even called Mr B on mobile !  I was so embarrassed to cause a fuss but my mind was all over the place,  i have totally lost confidence in my body - again! - and was really relieved.  He said that there are still other options to pursue including a custom-made stent....I am not sure I want to go the venous reconstruction route, and I am wondering if maybe just exercise therapy would be the easiest option and I just deal with the pain (which had improved a bit) and wear the stockings.  He has been great and is seeing me again in 2 weeks to discuss the next step.   Physically I am feeling a lot better now and mentally too!  I think it has affected me a lot because my husband and I really wanted to try for a baby next year and this might delay that even further than it already has.  I am in a much better place now!  Was especially great to see my parents after nearly 2 years.  Hope you are all well and that everybody is making good progress!   Will let you know how it all goes, hope that Rob is well on his way back to normal and enjoying his leg to the fullest!

Best wishes to all!

xxx

Hi nadine

Really glad to hear your update. I'm sorry you have had a tough time of it and that things didn't happen how you expected them to. I'm glad there are future options and that you are in a better place than you were. Do keep the updates coming.

I saw Mr B a few weeks ago in clinic and after assessing me, overall it was felt that my symptoms don't really warrant intervention at the moment. Exercise seems to have got my leg a long way towards recovery. I know the option of surgery is there for the future if things gets worse which is reassuring.

All the best

Hi Nadine, so sorry things didn't work out as expected, but at least the news is possibly good for the future. They are so good at reassuring and very personal and go the extra mile. I was beginning to worry not having heard from you. Will keep all fingers crossed for you.

 The drugs and anaesthetic can make you go a bit weird, I remember when Rob had his first abdominal op he woke a bit paranoid and thought they were going to try and kill him! 

He is continuing to be very well, running and cycling and going to the gym. He saw Mr B 2 weeks ago and scan was good, he asked about the future but was told we assume the stents will be fine but we don't know for sure. Hopefully the trial will continue and results will be great and lessons learnt to the benefit of future patients.

Good luck to all.

Sheila.x 

A good result for you Amy. You have done well and know that if things change they can help you if necessary. Good luck for the future.

Sheila.

Hi Nadine

It seems that it is a bit of a roller coaster for you; thank goodness for forums such as this and the FB page for Thrombosis UK.

If it is any consolation there are many people on the FB page who have overcome clots and gone on to have children as long as the risks are properly managed. I know it is easy to lose confidence and to doubt your responses to things but it is always worth checking it out if you have pain in case it is another clot. Also staff are much happier you saying and it being checked than to run the risk that you say nothing and you end up with a far worse outcome.

From personal experience with my daughter, the one thing I would say is that she has had a far better recovery than we ever thought possible as her clot was really extensive. It is nearly a year since it happened and she has soldiered on and plays hockey and walks everywhere if she can. She also did a bit of swimming at the beginning to try to get back some circulation and has built up her peripherals as a result. So it seems that if you can work through the pain and try to get as much activity as you can whilst using the stockings to help with the side effects like pain and swelling, things can get better over time. 

Also I am grateful for how lucky we have been that we still have her as she was travelling miles from home when she got her DVT. So she has the chance to still live her life albeit with some extra problems and things she has to worry about but she is still here and has so much still to look forward to, as I am sure do you!

Good luck with your next appointment; we are all thinking of you!

Karinx

Hi Sheila, Amy, Karin!

Thanks so very much ladies for all your kindness and encouragement, this forum has helped me enormously. I was really keen to let you know how it had all gone once I knew exactly what had/hadn't happened and had become less of a paranoid wreck - especially when I convinced myself I had another clot!  Just so thankful that even if this hasn't worked out, there are alternatives if I choose to go down that route, and at least I am in the best hands.  It is so reassuring to know that.  You never know what new therapies/treatments are round the corner.  Right now I am getting myself back to the gym and building up my fitness, my PTS has been aggravated a lot by the op and exercising today has helped tremendously, so i expect it will get back to "normal" soon.   Exercise seems to really have worked wonders for everyone - it's amazing that Rob is able to return to all his activities now, hopefully the stents will just get absorbed into the lining of his veins and he won't have to worry about them ever again - that's what they told me would happen eventually.

Amy I am really glad that you've managed to overcome most of the symptoms through exercise, at least we know that if it gets worse there are true specialists at St T's.  It's amazing how much ignorance there is in other hospitals.  And Karin your daughter will probably improve even further over the next year.  Do they know what caused the DVT?   Mine seems to have been down to using a high-oestrogen pill, I really think they ought to profile women for thrombophilia before they prescribe hormones.  The haematologists at Guys have referred me to one of their obstetric haematologists so that we start planning to try to have baby in the future, so I 'm still hopefull it will happen for us.

Good luck to everbody and thanks so very much for all being so lovely and so positive!  Finding you all has been amazing!  Will let you know how it goes with Mr B on the 19th.

Best wishes to all!

Nadine xx

Hi Nadine, Glad to hear an up beat post from you, it shows how having  hope for the future is so healing. 

Let me explain why we are where we are now and how we got here.

When in Jan 14 Rob had his, in their terms, a massive DVT and they gave no hope for anything other than a complete life change with future problems regarding mobility, I was out of my mind. Rob expected to be in a wheelchair and unable to continue his career in sport and any of his hobbies. They gave no hope for improvement only that he would get worse. 

The first thing that was positive is that Rob did improve, after 3 months he could see that he was able to do more than was expected and even though he had to deal with pain and swelling and wearing a compression stocking he coped. The first appointment at G&St T seeing a member of the team had mixed results. They said go and exercise a lot as it is good for venous health and forming collaterals, which was great. They also said that had he gone there just after DVT happened then they would have removed it and he would not have been in the situation he was in. That made me so angry as we had no advice about this, his hosp did not mention it at all, just because they did not have the expertise, why did they not refer us to somewhere else. Also the Doctor at G&StT said they prob wouldn't stent as prob occlude. They then tested and scanned and said yes he should and could be stented, especially for his future and for the MTS. They found that the DVT had left scarring from ankle to upper abdomen and had reduced his blood flow a great deal especially at the groin hence the MTS. We felt very positive about the stenting even though he continued to get better on his own through exercise and healing and over time. Such a rollercoaster ride! We are so grateful that he is so athletic as his previous fitness had a big impact on his recovery. 

I was also so delighted to feel that we were getting the best possible advice from the experts who were at the cutting edge of vascular medicine and so I didn't feel that we were having to do all our own research and battle ignorance.

I have every confidence that Rob will stay safe and having got through the initial stage his stents are being covered by his own cells and have become part of his body. Still a bit confused about MTS though! 

And finally, 33cm of stents, no wonder he had swelling! No wonder he was 14 days in hospital learning to walk again. 

Still feeling very positive and lucky. 

Good Luck To All.

Sheila.