Proximal Deep Venous Thrombosis - terrible swelling

Dear Sheila (and may this be read by other participants in this forum),

As concerns the underlying cause of my DVT - it is plausible that I may have a serious blood problem, but I have not been tested extensively in this regard. What I can say based on routine blood testing over the past few years is that I have a thrombocitopenia (my count is between 60-90, the norm, as you may know, is well over 140).  

I am a translator and my work requires me to spend hours on end sitting at my computer desk. I am say 90% sure that the nature of what I am doing has triggered the tragic event, i.e. my DVT did not came about perfectly unprovoked. But you will agree that with normal people it would have not occured so easily - by normal people I mean a substantial majority who would not have my tendency to clotting. Having said that, I ought to have my blood and its properties tested more extensively, but this is a LONG TERM issue.

The fact of the matter is that I have an alarming SHORT TERM problem, i.e. as I put it previously - a TERRIBLE SWELLING. My leg feels as if it is ready to burst, literally. Needless to say, I am frightened to death.

You ask: Is anticoagulation working? - well, as far as I am aware of, anticoagulation has mainly preventive effects (am I right or not?) - i.e. in my opinion it prevents the growing of an already existing thrombus or the occurence of further clotting within your body.

As for stockings, I cannot use any compression stockings in the sorry plight that I am in because they literally squash the abnormally swollen flesh of my leg, cause critical skin reddening etc., i.e. stockings may be useful when there has been at least some easing of the swelling, but I am still not there.

So, speaking SHORT TERM I am living through an overwhelming crisis - a swelling that I do not know what to think of.

I am like the victim of a crippling road accident who needs to be extracted from the burning car first and only then taken care of in a more conventional way.

What I asked yesterday was - how did anybody afflicted by a similar nightmare live in the immediate aftermath of the "road accident" (you are free to give a step-by-step description, why not, please describe it on a day-to-day basis).

I tend to consider that having been spared a PE (pulmonary embolism), being by all means a good thing, would still be little comfort, if I were to spend the rest of my life with a never-ending swelling (is such a punishment possible, by the way???).

To hear that there may have been people who managed to get back to some normalty would be extremely encouraging to me, so my invitation to hear such stories remains.

Looking forward to hearing from you Sheila and many, many other people.

Konstantin.

    

 

Dear Llyr,

You say you are having a PTS.

Would it be too much trouble for you to describe how it manifests itself in your daily life? Konstantin. 

Evening Konstatin

I hope you're feeling better.

For me PTS has been a pain in the arse.  So far I've had 4 months off sick from work.  I'm a nurse and am unable to complete a shift, my GP has told me that I should be looking for a different job.  I get pain at most all times of the day, am told I have nerve damage due to the number of clots.  My leg swells even though I'm wearing a compression stocking.  I find that as the day progresses the symptoms become more pronounced.  I have been referred to a Vascular Surgeon and also to the Pain Management Team.

Im sorry if this all sounds terrible but this is currently my life.  At least I'm doing well on the Warfarin 😀😀😀

Hope you get the answers you are seeking.

Regards, Llyr

Hi Ilyr, sorry about your PTS.

In our experience there is v little upto date info out there in the NHS regarding PTS. My son was told he would lose much of his mobility when he gets older due to the DVT damage to his left leg and there was no treatment and no cure. He was told he needed to change jobs as he is on his feet all day.We did not take this lying down! nothing if not stubborn. We found the Thrombosis UK charity which was useful and when looking on the internet found recent work by Mr Stephen Black at Guy's and St Thomas Hosp London. He told my son 4 months ago that he has now done 130 stenting ops to improve the circulation of damaged veins. I had seen that they had been stenting in the USA for a few years so thought it was likely to happen in UK and it has. His hosp docs and GPs knew nothing about it.

Look at the internet under PTS and there is quite a lot of useful info. I found the World Thrombosis Day 13 October 2014 happening in London but couldn't get there for the day but it was recorded and put on Youtube, really interesting, worth watching. It shows Mr Black,Vascular consultant and Prof Bev Hunt who researches and campaigns for DVT avoidance etc.

Finding a possible cure and treatment at last after just go away and take your Warfarin and wear your stocking is great for the head!

His GP referred him to G&ST and they were so helpful, especially encouraging him to exercise to improve circulation. He has been down to see them 3 times for assessments and tests and likely to offer him stenting in Oct, depends how his body has healed by then. They have assessed him as having May Thurners Syndrome, google it, which is why they are prob going to stent in the groin to open up the blockage. He would prob not have had a problem from the syndrome if he had not got a massive DVT with no treatment ,apart from blood thinners given after the event but not before! Long story on IBD forum as got severe Colitis from nowhere leading to perforation and ileostomy and post surgical DVT.

If you feel that you have not had an upto date assessment or enough advice about PTS then get a referral to G&ST or I have been told there are now surgeons at York and Manchester hospitals now. I don't know about nerve damage my son has pain and swelling from the blood pooling in the lower leg but otherwise no pain. 

We have had v mixed experiences from The NHS, some doctors not really upto the role, but the good guys at Guys etc have given us hope and confidence. I'm sure as a Nurse you have met the good and the bad.

Note to Konstantin, not everyone gets PTS!

I was really hoping to find some post stenting info on the forum to give us some guidence about what to expect but no such luck, anyone out there?

Good Luck.

 

Hello Sheila,

Hopefully you'll get some information regarding "post stenting" soon.  My Consultant Surgeon wants me to wait till mid 2016 for my total knee replacement, following my DVT in February this year as he thinks the risks are high for me to have another. However, if my knee and/or the pain gets worse he'll have to do it earlier and would have a Vascular Surgeon give me, what he described as, an "umbrella" above the knee to prevent any clots from spreading. Though this sound different from what your son will be getting.  

Having worked in the NHS for 15 years, though not as a clinician but in admin. I've certainly come across the "good and the bad"!! At the moment my local hospital is about as bad as it can get and I can only hope things improve before I need surgery.  The pain in my knee is pretty awful at times but I do wonder if I should just put up with it and hope I don't get too immobile rather than risk another DVT.  Talk about being stuck between a rock and a hard place!!

Janis.

Hi thanks for reply

. I have heard of a filter above the DVT which stops a clot or part of clot going upwards towards heart etc, used when people can't use anti coagulants. Maybe this is the sort of thing as it stops a clot spreading.

The stent is a collapsed framework which goes in the leg as an injection and is pushed up the vein and opened up to fill the vein and grows into the vein wall. Just like heart stents in arteries. The patient is on Warfarin for about a year after as a clot might form at the site.

My sister had a total knee replaced recently in hosp and was amazed by the whole procedure, as she was active almost straight away and did her physio with very little pain. She had a spinal anaesthetic so recovered quickly, will avoid the morphine as it made her sick, having second in Dec. She obv had the injectable blood thinners in the hosp and for about 28 days after.

Hope you make the right decision, is there any risk in the "umbrella".

My son had a 4 hour op on his abdomen, one year after his massive DVT, and they blood thinned in a controlled way during and after surgery as it was elective so planned. He was sent home with injectable

anti coagulation for about a month, all was ok.

He had complete confidence with this second hospital as they were specialist and they treated him as a human being not an occupant of a bed. We would have been referred to a second hosp anyway as the "general" had made 2 really good attempts to kill him through ignorance and poor care. We are at the Ombudsman stage after 18 months and we are grateful that they are investigating on 2 accounts of negligance, might take another year until finished. As we raised so many complaints about his care they changed their protocal on risk assessments for abdominal surgery patients and so we feel we may have stopped others getting a completely avoidable DVT. We want them to aknowledge their errors as it has changed his life.

There is progress out there as there are so many people who develop DVTs and it can be avoided in many cases. The DVT treatment and symptom relief is still new so many hospitals havent even heard about it and there is only 3 places in UK doing it. It started in Guy's and St Thomas in London.

Good Luck!

Dear Sheila, I have followed you and your son's story with great interest and am so sorry he has suffered so much.  He is very fortunate to have such a strong, intelligent and resourceful mum.   I had an unprovoked dvt in my thigh (10cm) in May 2014 although I had been to my gp for months before complaining about swelling in my legs and extreme fatigue.  He told me to have a pregnancy test and to drink more water.  My nhs experience has been disappointing time and again. I was on warfarin for 8 months and then discharged by a nurse who didn't even examine my leg.  I have PTS and have constant pain.  It often makes me very depressed, I am 37 and a teacher and this has had a massive impact on my mobility, self confidence and sense of self.  I am a huge gym and fitness fan and have tried to keep going but the leg pain often frightens me.  It is a relief to hear that your son was encouraged to carry on.  I hope he's better.  Like you, I researched alternative options and have spent a fortune seeing consultants privately. They all told me grin and bear it with stockings.   Then I read an article about Mr Black, read about his work at St George's  and I have a referral to see him finally in 2 weeks at St Thomas'.  He is really amazing, a real pioneer and I feel so lucky to have access to his team.  I don' t know if I am a candidate for stenting and am afraid to hope for too much.  I tell myself that people deal with far worse but i feel like my life has been curtailed by this.  I live in dread of it recurring, and my family live abroad so it's been hard to get through this psychologically.  Reading your story has helped me a lot because I recognise so much of your struggle in my own. Really hope you get the outcome you hope for your son and that he is able to pursue his sports.

all the best

nadine

Hi Nadine, I am Konstantin.

To avoid repeating details, you can read my story here above.

Just like you, I am in despair.

I am a translator and my profession is the only source of income, and what is more, a real passion. To translate means having to sit for hours on end at a computer desk.

What shall I do from here on - I have shudders running down my spine by merely thinking of it.

Nadine, it seems we have a terribly common problem - an overwhelming psychological distress.

May I hope to be able to hear from you?

Maybe I shall revert to you with more afterwards.

Kind regards, Konstantin (56, translator with English and French in Bulgaria).  

   

Dear Nadine, so pleased to hear from you and thanks for your good wishes. I wrote you a long reply but when i pressed the button it disappeared! so I will attempt to have another go.

I am so sorry you have this problem especially as it came out of the blue! I hope they have done blood tests to check for underlying causes.

My son was at Guy's and St thomas' a couple weeks ago for more blood tests and they had actually processed his lab tests just after he got his DVT ( from his general hosp) so had a comparison. No results yet. His consultant asked him about his anticoagulation at the time of the DVT and my son said "None", so the C replied "What are YOU doing about it?" !! My son replied we are at the Ombudsman stage now! Just goes to show that if we had been in the right place he would have been assessed at high risk and anti coagulated and no DVT and no problem. If only the NHS were all as good as each other we wouldn't have been talking now. If they had sent you to A&E when you had first had the leg pain a scan would probably picked it up and you would have had blood thinners.

The only good thing is that as his DVT was so large it was unmistakable, but then it had been probably brewing for days and as he had been discharged with no mention or info we didn't spot the signs. The Gen hosp have no excuse for this and they WILL be found negligent but the important part is they have changed their protocol so others shouldn't suffer like this. My son had his DVT go massive as he walked up to bed at midnight and called us and we rushed to A&E. He was on loads of painkillers and if he had ignored it and gone to sleep he might not be here.. Makes me want to scream with anger.

He is going to G&ST in Oct to make decisions with them about his stenting. He is less swollen at the end of the day now, still wears compression stocking, except when hugely hot. But as Mr B says it doesn't stop PTS but reduces the symptoms so if you leave it off once and a while it does no harm.

Just being told he was a candidate for stenting was the biggest boost for him( and us too). Docs can often disregard how the psychology of the condition can be as bad as the symptoms itself. As you have said yourself to suddenly have to deal with a life changing condition that some have said has no cure and will get worse is so depressing. Finding some hope is essential, after all we all need a reason to get up in the morning.

I told Rob you get on and get better, as he still had the Ulcerative colitis to heal from, and I'll do the research, after all there is bound to be progress out there and if they can sort out arteries and the heart it must be easier to deal with the legs.

I found Thrombosis UK helpful and it was on the day of the World thrombosis symposium in London that I found Mr B and his pioneering work. I watched the international meeting on youtube and was so impressed by the positive can do attitude and felt that if it's not for us now it will be soon.

I hope your assessments work out for you and the treatment goes a long way to relieving your problems.

My son's competitive spirit has helped him through this and kept him fighting to get better. He is now fully reversed and leading an even more energetic life so if it wasn't for the DVT life would be good so hopefully he will have treatment when he is ready for it.

By the way I am a teacher too but only supply now. I take care of 30( 5 to 9) year olds and I cannot understand the Medics saying I don't know when asked about new treatments or where to go to get specialist help. My attitude has always been, ask questions, find out from wherever you can and go up the line as if you don't know, they should.

Good luck and stay positive.

Thanks so much Sheila!  I can't believe the appaling negligence your son suffered, Thankfully he is on the mend now and it sounds like he has got his life back on track with your help.  At least you can get some satisfaction from having changed the systematic lack of prophylactic anticoag at that hospital - an oversight like that can cost lives and it's unimaginable that they can let that kind of thing slip.  i think a lot of the NHS problems are due to a lack of joined-up thinking and communication.  Reading your posts has been very encouraging and has made me feel a lot more positive.  I'll let you know how I get on at my appointment, at least I will be seen by the best person possible so I can come away with some closure ieven if I am stuck with the symptoms.  I use stockings all the time and this really helps the swelling, but the cramping and pain persists and though i can deal with the pain, it's the thought of it being another clot that is most distressing.  I don't have a thrombophelia, and it's likely that the clot was caused by a conflagration of different thing - I was on one of the 3rd genereation contraceptive pills.  Anyway!  I will let you know how it goes and will be really keen to hear about your son's progress,  He sounds like he has made a remarkable come-back, so we can all take hope from that and very much hope he can do all the things he wants to do!  If anything good has come from this it is to teach me the real value of things.

All the very best!

Nadine

Hi Konstantin,

Very sorry to hear about your problem and the pain you are in.  First of all let me reassure you that the swelling will subside, mine took about 3 months to start going down but now I have only about 1.8 cms difference in width between them and it isn't hugely obvious.  The stockings really help and the key is to try to get them on - they are tricky.  try using the open toes ones and slip a small bit of plastic over your foot to get them on easier - you can get some gadgets to help put them on but i just use a silk sleeve.  Get yourself measured by your pharmacist as this is what i decided to do - the Daylong website also has loads of different types that might suit you.  It will get better but be patient with yourself and try not to panic.  I know this is hard but if you are on warfarin it is highly unlikely that another clot will occur and all you need to do is focus on slowly allowing the clot to be broken down by your own body.  I still felt like a wreck when i was told this but  it is true and you have to trust this is the case.  Walking and stockings are the best thing - and you can try using a stand-up desk for your translating - they are all the rage now in offices I believe.  I am desperately trying to get back to living my life again, but it has taken time and acceptance and modifications.  You are only 1 month in, and many cases resolve entirely so you may find that in a few months time you are back to normal!   I really hope this helps and wish you all the best.

Wishing a speedy recovers,

nadine

 

Thank you so much for the encouraging words, Nadine.

Konstantin.

Hi Nadine,

Now that you are, as you say, left with 1.8 cms difference between the legs - is this, I wonder, in terms of circumference, cross sectional view or what?

You must be 15 months removed from the date of your  DVT, are you not?

How different were your legs in the immediate aftermath of the DVT. You say it took you 3 months for the swelling to start going down.

You say you are having a constant pain these days. Is that pain much more of a problem than your residual swelling at present?

Please excuse my asking you these questions, but I am desperately trying to imagine how my situation may happen to evolve over the course of time looking forward.

Konstantin.

 

Hi Konstantin,

Hi how are you doing? This is a marathon and not a sprint!!

Your body will reabsorb the clot over time, it varies according to the size of clot. You will benefit from exercise, walking, cycling and swimming, all move the muscles which move the blood and boost circulation. Don't worry about the pain you may feel during exercise, take painkillers if necc, try to build up the amount of exercise, slowly over time.

The good guys at Guys and St Thomas really know what they are talking about! loads of experience and they treat DVTs aggressively. If you have access to good doctors then ask about treatment such as clot removal. Raising your leg above your head by lying on your back and propping foot up against the wall each evening can help to reduce swelling.

My son's calf circumference increased by 6 cm within an hour of the DVT, measured in A&E but not measured again. After 18 months it is down to 1 cm at best, but if he has been on his feet all day its probably nearer 2 or 3 cm. He has an extra complication which apparently is not all that uncommon, diagnosed by scan with Mr B. He has May thurner Syndrome where the artery in the groin compresses the vein and increases pressure and reduces the blood flow leading to swelling in the ankle and calf. This is normally symptomless but becomes treatable with a stent at the site in the groin. This is probably what he will have in time.

You havent mentioned your bloodthinners. What are you on ?

Nadine is right about the compression stocking, when put on in the morning when your leg is the least swollen it will be tight but will reduce the swelling that would form without compression. It is important to have them measured by a professional and replaced as your leg heals.

Using a stand up support as Nadine says is good as you move and increase circulation, much better than sitting.

I havent said much about it before because it was all so scary, much easier now as we can look back on it. He took 3 days to stand and weight bear, 1  more day to straighten  his leg, and walked with a walker support to the end of the ward on the next. He had physio daily for 2 weeks and was only allowed out of hospital when he could walk up stairs. We took photos as his leg was so huge if was difficult to believe.

Now he runs 7 minute miles and plays tennis and cricket and copes with the discomfort. Being young and fit before certainly helps but he was told by the less knowledgeable that he should stop being so sporty and just swim as it wasn't weight bearing. Luckily we got to the right place and they encouraged him and it WORKED!,it took 18 momths though.

Keep positive, research on the internet, and keep moving!

Hi Konstantin, 

Hope you are feeling a bit better, I know you probably feel that the world has turned over, but please remember everyone's case is different. My left leg is still about 2cm bigger in circumference especially at the ankle even after the stockings, however the aesthetics don't bother me as it is really negligible, rather the pain and functionality is what I am concerned with.  If your clot is below the knee I think it very likely that it will resolve completely.  Usually the thigh and groin ones are more problematic.  Take heart from the fact that others have regained enough mobility to be able to run again! That makes me so happy!  the gym is a big feature in my life and I have been exercising as much as i can despite the cramp and heaviness so it s good to hear that this is recommended!  The only thing I avoid is leg weights and stretches as this causes too much pain. It took about 3 months for my leg to feel more normal.   The pain is constant but it manifests differently depending on how active I am.  Long car journeys are the worst and some weeks are better than others.  Moving helps so much and I always elevate it when sitting for long periods.  The fear of recurrence and the psychological shock of facing your own mortality so suddenly is much tougher to resolve.  Just think how you will be this time next year, hopefully in a much better place.  As Sheila has said, they are now aggressively treating dvt with clot busting drugs via catheter but this is only possible in the early stages, so perhaps in the stage you are now it may be possible.  Certainly worth investigating.  Take heart Konstantin, and very best of luck,

nadine

Hi Nadine and others,

We went to St Thomas today and the discussion with the lovely Mr Black was all positive. My son will have 3 stents by minor surgery soon. All my concerns about possible blocking of stents afterwards have been answered and I have been assured that he will be well and symptoms very much reduced. We both feel very lucky that this technology is around now when needed, must be a sign!

How are things with you?

So pleased to hear your good news Sheila.

This is fantastic news Sheila! I am so happy for him and for you. Well done for fighting to get him this ,you have been an inspiration and given so many of us hope.  I really hope it goes well and let us know how he progresses. I ve had my MRV and ultrasound now and waiting to see what the awesome mr black can do, if anything. At least I am in best hands.

best wishes to you and your son.

I saw him last Aug and hoping for the follow up appointment within next few weeks to discuss the next step but I am happy just to know I am under his care now and he can advise me on how to manage the pts if it turns out I have to live with it. I am so happy for you! Honestly I have been thinking a lot about your son because I recall you saying you d find out in oct. greatly relieved that the risks are minimal. This has totally made my day!  He deserves this so much after all he has been through.

 Best wishes and hooray!

Hi Nadine, really pleased to hear from you and to find that you have started along the road towards recovery. Thanks again for the kind words.

I am very upbeat about the procedure as Mr B was able to explain that they are already making refinements to the treatment in order to reduce the possibility of the stent blocking in the first 6 weeks after stenting. He and his team are making progress all the time and each patient has individualised care, so good for the confidence. Not at all a one size fits all, quick cure. Many of the negative comments online are because of the poor stents and less than perfect surgeons operating in other countries. The St Thomas team built up by MrB have been able to learn from other's mistakes and it is particularly encouraging to find that they developed the stent with the manufacturers  only for the venous system.

I still write on this forum as I so want others who are suffering from PTS and other post DVT problems to know that there is help and care and treatment out there and to ignore the ill informed GPs and hospital doctors who say there is nothing to be done. It takes a long time for the trickle affect to get the message out through the medical channels.

There is the need for treatment and it is increasing for all sorts of reasons and Mr B says he is only doing this now as there is a big demand. We are lucky to have him and may his success continue.

Keep us informed and good luck.

That s such great news especially to know the treatment is bespoke.  I think mr b I is the first person to have used this new stent. It's really incredible what they can do now and so upsetting that most physicians just expect you to grin and bear it and lug around a sore leg for the rest of your life. Especially if you enjoy sports and have an active job. It's even worse when your sons itself was hospital acquired or should have been avoided with the right prophylaxis.  Absolutely no excuse for that.   Hope the op goes really well let us know how he progresses! Really will be thinking of you both! I am feeling a lot stronger now mentally and just grateful to be here ! All the best! 

Couldn't  agree more. The aim is to get back to normal with as little pain and worry as possible. He has no date yet but is in the schedule for the next 3 months and has had pre op during his visit to St T.

My son has been hitting the gym and swimming loads, all to the good as he will be expected to be very active afterwards too. The only thing he will need to avoid is cycling because the groin stent would get squashed!

It was fascinating looking at the scans and having the difference between the  damaged veins and open veins explained. 

I can't really see why as a relativly young fit and healthy person you wont be suitable, I'm sure the results will be fine.

 It's like waiting for exam results, hoping for the best but fearing the worst, not wanting to hope too much as you might jinx it!!

Stay positive!