Proximal Deep Venous Thrombosis - terrible swelling

Allergies, blood and immune system
1

Hello,

I had a proximal (illeo-femoral) DVT on 7 July 2015, i.e. a month ago.

My swelling is no less terrible than a month ago and I am frightened to death - will it ever subside ?

I am looking forward to hearing from people who were in the same situation, but got rid of it.

Please share any positive experience - How did you get over it, How long did it take you ....

For obvious reasons I would not like to hear stories which ended badly.

Please write to me, my nerves are shattered by brooding over this nightmare all the time.

Konstantin.

 

2

Hello. I'm guessing you are taking anticoagulants and having your INR checked on a regular basis?

3

Hi Konstantin,

I have written about my son who had a massive DVT in Jan 14  on the forums under Post thrombotic syndrome and VTE and DVT. Lots of discussion there, he is doing very well and much less swelling and pain.

You haven't said how you came to get the DVT, was there an underlying cause such as being in hosp or injury? have you had blood tests to look for blood thickening problems or a disease such as IBD, inflammatory bowel disease?

Are you on anti-coagulation and is it working well?

Look at the NICE guidelines on the internet, they are v informative.

What does your GP or clinic say about the symptoms and how long they should take to clear up. Do you have a compression stocking?

My son had such a large DVT that it should have been treated but the hosp was quite poor and didn't even mention intervention to reduce the symptoms. He is now under the care of Guy's and St Thomas London as he may be stented to relieve the swelling which is because of the PTS and scarring.

Most patients are back to normal and don't need further treatment but it can take some time. The anti-coagulants reduce the likelyhood of another DVT but you should look at the websites to recognise the way to avoid them.

Take care and ask questions and educate yourself.

I hope this helps.

 

4

Good Evening Konstantin

I was diagnosed with a Femoral, Popleteal and Calf DVT July 2014.

My condition was made worse by having Bilateral PE's.

its taken a while for the Warfarin to settle.  I must admit that I wasn't religious with wearing my compression stocking and as a result I've now got PTS.

My only advice is to have an above knee compression stocking as it not only helps with swelling but aids venous return.

Have a chat with your DVT nurse on exercise too.

Hope this is of help.

Llyr

5

Hi, forgot to mention that exercise is good for the circulation and helps the collaterals to develop as explained  by the consultants at Guys london. The stocking helps the swelling to reduce just as elevating the leg helps too.

Hope to hear from you.

6

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.

    

 

7

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. 

8

Hi Konstantin, now you are getting complicated!

PTS is post thrombotic syndrome where there are on going problems after the dvt has healed. I have written loads on it under PTS on this forum. It is the long term effect of scarring and valve damage in the veins. That is why my son has been referred to Guy's London as they are the experts in these vascular problems and they are one of the few places in the UK where treatment is  available, in fact my son's GP didn't know about it at all. I researched it on the internet and heard about the Thrombosis  UK charity and they were helpful too.

My son was told by the docs in our mediocre hosp that he would have poor circulation and swelling and poor mobility which would get worse as he got older, that's why we looked for a cure!

So are your blood thinners working?, ie INR levels good and regularly checked. If you have this blood underlying problem with low white cells are they treating you differently? Are you under a hosp clinic for your DVT as they should follow up and scan to check the DVT is going. The body absorbs the DVT so you need to stay healthy.

It is recommended that you are mobile every 90 minutes if you do a sedentary  job, so get up and walk around, flex calves etc, just like you should on a plane. Keep hydrated too as this adds to the risk of another DVT, but if the blood thinner works that is less likely. Some people who have higher risks are on eg Warfarin for life to prevent DVTs.

Have you had counselling? I had a 6 weeks course at my GPs  and found it very helpful. This was because my son nearly died 3 times, long story, and I just couldn't cope but I developed strategies to help me to cope via the counselling. Also things got better.

I would ask loads of questions of your doctors and do as much research as you can and if necc get a referral to a  hosp  where they specialise in vascular and blood. Try not to worry too much but having answers to you questions from the right people should help.

 

9

Hi Sheila,

I would like you to elaborate on one of the points touched upon hastily in your discussion with me, but which impressed me a lot, namely the ability of colaterals to, as you put it, DEVELOP following a DVT incident and, with a little improvisation on your words, to take over completely and irreversibly the function of deep veins in case the latter never recanalize.

May the colaterals cope with the whole burden of blood circulation normally taken care of by deep veins?

Moreover, forgive my ignorance, but what hapens to such colaterals under such conditions, do they dilate due to the strain, do they make the leg look different ...

Konstantin.

10

Hi,

The collaterals are bypass veins that help the blood to flow where there is a reduction in flow in the main veins, and they open up and increase in size to aid the total blood flow. They are generally small but can become bigger if there is blockage. They don't take over but add to the volume of space for blood to pass.

The explanation is on the internet, I try and find easier explanations as the ones at the Hospitals can be too quick and complicated. The Consultant said they continue to open up and are utilised for approx 2 years. The swelling due to PTS is because the veins take the blood up towards the heart, against gravity, and with scarring and valve damage the blood flow is slower than the arterial flow downwards so the blood pools in the tissues in the lower leg. My son is on his feet all day and wears a stocking to reduce the swelling and elevates his leg whenever possible.

He is a sports coach and is active and fit so his leg muscles do a good job in compressing against the veins to increase flow upto the heart, so as I said he has been told to exercise and don't worry that it hurts and he is improving his healing.

He gradually got better but not fully recovered which is why they are considering a stent in his leg to open up the vein to increase blood flow.

It has taken 18 months to get here and he is now less swollen at the end of the day, as time went on he was able to exercise more and more without so much pain and swelling. The compression stocking does not stop him developing PST but it does reduce the swelling.

I havent seen any extra visible veins in his leg but he mostly has a stocking on.

You are assuming that you are not healing well, has anyone suggested you may get PTS?

Have you been measured for a compression stocking professionally? They are helpful in reducing the symptoms and do exist as a full leg so don't cause problem behind the knee. I hope this helps.

Sheila

11

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

12

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.

 

13

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.

14

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!

15

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

16

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).  

   

17

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.

18

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

19

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

 

20

Thank you so much for the encouraging words, Nadine.

Konstantin.