DVT extensive

[Jennybreslau]

Hi everyone, I'm new here, am currently suffering with a DVT extending from foot to pelvis, have been in hospital for 9 days and now discharged on Apixaban  anticoagulant  and a full length pressure stocking.  My leg is more comfortable without the stocking but am having  to wear it during the day.  Has anyone else experienced this kind of extensive DVT and how long approx  did it take to get better. :)) 

[Manofmendip]

Dear Jenny, welcome to our forum.

Sorry to hear about your DVT.

A couple of questions please?

1.  Where are you from? (This will help others to help you).

2.  Do you have a diagnosis of APS/Hughes Syndrome, as this is a forum for patients suffering from this condition.

Dave

[MaryF Administrator]

HI and welcome, do you have a diagnosis of Hughes Syndrome/APS?  Also where are you located?  This will enable us to help you more efficiently.   MaryF

[Jennybreslau in reply to MaryF]

Hi yes I do have a diagnosis from St Thomas's  & Guys where I attend the Lupus clinic, but I live in Hove nr Brighton

[Anon75]

Remember to take the apixaban 12hrs apart, ie 8 am and 8 pm. It will take many weeks for your body to break down this extensive clot, so taking the anticoagulation meds properly and consistently will be important. How long is your treatment plan? 

[Jennybreslau in reply to Anon75]

Initially for 3 months but I'm told will prob be for life. As I have Hughes syndrome .  Should I expect the leg pain to continue for weeks, months or years?  

[Anon75 in reply to Jennybreslau]

Life long AC is likely. The pain should subside in time as the clot is broken down, how long is very individual. The stockings post VTE is questionable and will add to the discomfort and there is little evidence that compression hosiery is beneficial if already anticoagulated.

[Lucky67]

25 yrs ago I had a clot that big (actually mine went higher than my pelvis).  My main vein from one leg was completely blocked at the hip for a section a couple of inches long.  I know from a scan two years later it was still blocked there then. 

I was in my early 20s and was told I'd have to wear the stocking for life .  I wore it for 15 years but was tested then and I have near normal return, so could stop wearing it. (I was told I was lucky I was so young when I got the clot).  I don't even limp any more, very occasionally it will ache a bit if I am walking very fast. And the ankle still swells a bit sometimes. It was painful for a long time, did gradually get better - I was still limping slightly and getting minor manageable discomfort after 10 yrs.

The stocking is to stop you getting long term problems associated with blood pooling in your leg  - to stop things like ulcers developing. It is really important to keep wearing it. And I think it contributed to my 'cure'. 

Once a clot is firmly established it becomes stable - some of it may never completely disappear. However I have now have an 'abnormal vein structure' - other veins have stretched to take the blood especially around the blocked bit in my hip.  If you ever need investigating for another potential DVT you need to let the people doing the scan know - you probably would be better having  done in the vascular dept with your current scans to compare. (I was recently told I had another DVT in that leg but now they think it was just my old one...and my dodgy vein structure)

The only other problem it caused me was the limp/more weight on one leg caused me to twist my spine a bit - I got back and hip pain  - so I had to see the osteopath (? -that sounds wrong ...but basically a person who deals with -- give you a lovely massage then crack your back)   to get it straightened every few years. And I needed to see the physio when I was pregnant as the extra weight caused me hip pain too. 

 I know at the time it seemed the end of the world - especially cos I was so young. The stocking is hardly attractive (flesh colour? - no-one has flesh that colour!) and uncomfortable but it does get more comfortable and less of a faff to put on/take off over time - you get used to it. When I first stopped wearing it I missed it, felt like I'd forgotten to get dressed properly - like I not wearing my trousers or something!

But the leg did get better and now it doesn't cause me any problems...I have a normal life. And mine was really really bad - maybe yours isn't so bad.

Good Luck.

[Lucky67]

25 yrs ago I had a clot that big (actually mine went higher than my pelvis).  My main vein from one leg was completely blocked at the hip for a section a couple of inches long.  I know from a scan two years later it was still blocked there then.

I was in my early 20s and was told I'd have to wear the stocking for life .  I wore it for 15 years but was tested then and I have near normal return, so could stop wearing it. (I was told I was lucky I was so young when I got the clot).  I don't even limp any more, very occasionally it will ache a bit if I am walking very fast. And the ankle still swells a bit sometimes. It was painful for a long time, did gradually get better - I was still limping slightly and getting minor manageable discomfort after 10 yrs.

The stocking is to stop you getting long term problems associated with blood pooling in your leg  - to stop things like ulcers developing. It is really important to keep wearing it. And I think it contributed to my 'cure'.

Once a clot is firmly established it becomes stable - some of it may never completely disappear. However I have now have an 'abnormal vein structure' - other veins have stretched to take the blood especially around the blocked bit in my hip.  If you ever need investigating for another potential DVT you need to let the people doing the scan know - you probably would be better having  done in the vascular dept with your current scans to compare. (I was recently told I had another DVT in that leg but now they think it was just my old one...and my dodgy vein structure)

The only other problem it caused me was the limp/more weight on one leg caused me to twist my spine a bit - I got back and hip pain  - so I had to see the osteopath (? -that sounds wrong ...but basically a person who deals with -- give you a lovely massage then crack your back)   to get it straightened every few years. And I needed to see the physio when I was pregnant as the extra weight caused me hip pain too.

 I know at the time it seemed the end of the world - especially cos I was so young. The stocking is hardly attractive (flesh colour? - no-one has flesh that colour!) and uncomfortable but it does get more comfortable and less of a faff to put on/take off over time - you get used to it. When I first stopped wearing it I missed it, felt like I'd forgotten to get dressed properly - like I not wearing my trousers or something!

But the leg did get better and now it doesn't cause me any problems...I have a normal life. And mine was really really bad - maybe yours isn't so bad.

[Lucky67]

Sorry for double post!!!  It wouldn't submit then it did twice...

[Jennybreslau in reply to Lucky67]

Thanks didn't realise I could be suffering for such a long time? Do you know how such an extensive clot develops, did you have previous probs with your leg. Dr thought I had cellulitis about a week before the clot was confirmed. 

[Lucky67 in reply to Jennybreslau]

I had a lot of other problems at the time - did a long haul flight, smoking and on the pill, had a PE diagnosed as pneumonia and then had salmonella....(so dehydration and bed rest) basically when my leg swelled up and was a bit sore that was the least of my problems so I ignored it for a few days. They also think I had two big veins in that leg (calf) to begin with -but not really sure cos of the damage but that would explain why it didn't swell until it was so big.  If the flight started it it was growing for 3 months...

Mine

ran the length of one leg, completely blocked at the hip  and had gone past where the two main veins from your legs join together - the main vein from my whole lower body to my heart...

It is also likely I had another one in the other leg a few months before, but it was never confirmed, which could have caused the PE.

I did have an APS diagnosis but have tested negative for years and not had another problem. Was on warfarin for life but stopped after 5 yrs, was on aspirin and now nothing. Had a suspected clot about 2 yrs ago but as I said the scan was inconclusive and my consultant thinks it wasn't one.  

I think it really depends on how bad yours actually is - is anywhere completely blocked?  It was described to me like sand silting up a river -so the length of yours could just be a partial clot - which would be better, you would recover from more quickly. I think you need to ask your doctor/consultant how badly blocked it is and see what they say.  After a few months I could get around not too badly but did have a limp. Trying to walk quickly made it worse, was really painful. 

[Lure2 in reply to Lucky67]

Hi Lucky 67,

I read the above and was very surprised. You have had clots, were on Warfarin for 5 years, stopped, were on Aspirin had a new clot and stopped even the Aspirin!

Now you have nothing. You have APS and have had negative antibodies like so many here. They go up and down. You had a clot two years ago.

 I wonder what Specialist for APS you have had who has treated you like this?!

If I were you I would certainly look for a Specialist of APS who could put you on anticoagualtion for life (as you had earlier) BEFORE you get an "event"!

All clots are not seen on a Scan. Some of us have microembolies.

Please look for an Expert!

Best wishes from Kerstin in Stockholm

 

[Lucky67 in reply to Lure2]

When I was originally tested it was 25 yrs ago.. and the tests weren't that conclusive even then (and that was at St Thomas').  I have a bit of a confused history.

After the recent suspected clot I was on Warfarin for a year but the scan was done in the general unit and it was inconclusive but as I said lots of existing damage. It took 9 months to get a scan in the vascular unit and they are pretty sure it wasn't a new clot...

Apparently new research shows that aspirin isn't effective at preventing DVT, I have stomach problems through long term aspirin use .

It is a risk but use of any blood thinning medications comes at a risk. At the end of the day it was my decision and  I can change it if I decide I want to.

No matter what I obviously am prone to clotting  so I use eg fragmin for flights and now I am approaching that age but I won't use HRT. If I did anything to increase my risk (needed long term bed rest etc) I would go back onto medication (or obviously if I ever got another clot.)    

[Lure2 in reply to Lucky67]

The problem is you have got APS and at present you are on no anticoagulationdrug.  If you ar unlucky , you may get a new DVT or a stroke. That happens without warning!

What does your APS-Specialist say?

Kerstin

[Sandrapanda]

I had a DVT similar to what you describe and that is what lead to my APS diagnosis.  I was on warfarin for approximately four months then taken off and tests at that point were positive for APS. The pain for me was worse when INR was below 4. My dr at the time was good about listening to me and kept me at a high INR so my leg pain was less. It took a good year and a half for the pain to resolve but I still get pain in the form of intermittent throbbing on that leg. I do have compression socks and wore them a lot during the first year. I still wear them when I fly and when my leg feels tired and achey, which is less frequent now. I did start exercising a lot to lose weight and feel this helped tremendously in getting the pain to resolve and better blood flow. (Make sure the clot is resolved first before a lot of exercise though)  I am on only high dose aspirin now. (They told me I could move to low dose but I feel safer on 325 mg). Make sure to elevate your DVT leg as much as you can as that helps relieve pain as well. I still sleep with pillows under my legs and cannot lay on top of that leg without it causing some discomfort. Hope you feel better soon and that the clot resolved quickly!

[Jennybreslau in reply to Sandrapanda]

Thank you

[thomas_tz]

Hi, 

firstly, get well soon. I had a DVT some time ago behind my knee, so much smaller than yours. I was really annoyed at first, when the dr told me I will need to wear the compression stocking for a few months. 

The problem I had was a) I was diagnosed after some time of having the DVT, b) they only gave me compression class I stockings when diagnosed, c) even when moved to class II, the quality was very low. This ( I believe ) caused me to have issues with my valves, and I now have to wear it all the time. 

My suggestion would be to ask your doctor for the best brand (I use Sigvaris, but this is what my dr suggested in the end); to wear them properly (I think you need to have the leg high for a few minutes before putting on); and to change them regularly, as they become loose after some use. It may seem like a pain now, but it can save you from having to wear them for the longer term. 

I hope this helps, Thomas

[Jennybreslau]

Thank you Thomas

[Linda72]

Hi Jenny

Sorry to here you have had an extensive DVT, I can so relate to your situation. In 1999, I had one from ankle to groin (complete blockage) after taking oral contraceptives for around 8 weeks. It put me in hospital for 8 days. I then went on warfarin for 6 months after I was discharged. I was diagnosed with APLS after I tested high positive for both antibodies. The specialist gave me an option of coming off the warfarin after 6 months and then staying on low dose aspirin for life, becasue he figured the contraceptive pill was the trigger. 

It took a good 6-12 months for my leg to feel normal again, and the colour of my toenails was more purple compared to my other foot (there is still a slight difference in colour even now 17 years later, however I havent had any pain. It does take quite a long time for all the old clots to be re-absorbed by the body, and my scans showed a little bit still there after 6 months. The clot also destroyed / damaged the valves in the vein so they are no longer functioning properly, which unfortunately meant I was at a much higher risk of repeat DVTs. Six years later (whilst on low dose asprin) it did happen again (in the same leg), from mid calf to groin with another 5 days in hospital. So now I am on warfarin for life!

That was my experience, but of course everyone can be so different. 

I wish you all the very best for a speedy and pain free recovery Jenny!

Linda

[Coppergirl]

Hi Jenny,

I too had a similar clot - mine started up in the IVC just below my kidneys and clotting was found all the way down both my legs too. Not fun! It'll be anti coags for life, but the new one you're on, apixaban is so much better than Warfarin, so that's some positive news. 

As for your symptoms it really depends. If you've not had too much damage done to your legs you could make a full recovery. However, if you end up with Post-thrombotic syndrome like me (where the damage means your legs can't recover fully) you could end up with ongoing discomfort. I think my case was a pretty drastic case of PTS, so don't get too down, and even though I still have pain and swelling now the symptoms have improved every day (its been 16 years now!).

Do wear the stockings, they don't feel that great I know, but they will make a difference, mine really help reduce pain and swelling and make it easier for me to get about. If you've got those thick, horrid ones the GPs give you then you can get some much nicer, more 'normal looking stockings and tights, that are much thinner (no one can tell they're medical stockings!) but they are expensive. I get sigvaris tights, but they're about £80 a pair! 

I hope this helps and wishing you all the best. Happy to chat through anything privately if you think it would help...

[Jennybreslau in reply to Coppergirl]

Thank you I suppose we don't know if damage is done this early in the process, presumable time will tell x 

[Coppergirl in reply to Jennybreslau]

If they diagnosed you quick then you'll prob have a full recovery. To be fair, it took a month from my first symptoms before they worked out I had the mega clot! :s 

[MJLS]

I had similar when I was 16 which extended up into my iliac vein. Took me about 3 months to recover but permanent damaged was done t my leg x