Sticky Blood-Hughes Syndrome Support

Has anyone got damage to their legs due to DVT and how does it affect you ??

Hi all

I have suffered multiple dvts in my right leg and a Pe in 2004 i had a heomorage which resulted in full lost of circulation to my right leg, there was talk of amputation at the time but fortunately circulation was recovered but has resulted to vein and valve damage and post phlebetic syndrome. I have several numb patches around my right knee, my feet / heels go numb when lay down and i have to elivate my legs as much as possible, i have problems with swelling and pain if stood or walk for long time and I have recently started showing signs of varicous veins.

Has anyone else had any long term damage or affects due to dvts that stops you doing day to day things.

I am under Haemotology who has said the numb patch would go in time but in 8 years it is still there and feel when i mention it they dont seem to alarmed. i have recently been refered to Neurology to check it as it seems to have moved down my leg or get worst if my INR isnt right. my range is 3.5 - 4

9 Replies

I lost my left leg to 5 clots. It finally had to be amputated due to gas gagrene. That was 17 years ago and I still have severe stump pain. Don't laugh, I know it sounds crazy, but the pain is there and I am on percocet to try and numb the pain. I feel for you and wish you best of luck in finding the right person to help you.


Hi revamp,

Yep the circulation in my legs is very damaged and i get a numbness on my right side from the strokes i had. I get a numbness still on my right side and i get a pain in my lower back. Due to the damage from the stroke i now use a wheelchair and have a right sided weakness, I think the damage done depends on your age, life style and where it is.



I have a strange pain in the area of my DVT in my calf and that DVT was 26 years ago. I had to have my veins stripped to do the vericose veins being so terrible I could not stand without pain. I have numbness that moves down that area and the circulation is not as good in that area.

I was told that if after a year it hasnt resolved it likely wont. I do notice with a low INR it all seems worse or magnified too.

Now they can do a much less invasive treatment for the varicose veins than what I had so many years ago. I wish you the best...I understand where you are coming from.

I havent had a long term issue other than it being numb and painful at times. Do address the vericose veins only gets worse without some treatment.

Take care,



so sorry to hear about everyone's pain. I could not even imagine having to have my leg removed. I do have a damaged left leg due to massive clots. my entire leg was clotted but I am so thankful it eventually was disolved after a large bit broke loose and gave me a very nasty PE. My left leg stays swollen almost twice as much as my other one. It has very poor circulation and has pain all the time. I hope things go better for everyone.


Hi all,

Ten years ago in my early 20s I had clots from my IVC all the way down both legs which my legs never recovered from - Ive been told the term is acute post-thrombotic syndrome. I have a constant level of pain but i've found its much more manageable after being put on Hydrocholorquine. i've been very fortunate in that my legs look normal, although whenever I do any small amount of walking they swell and get more and more painful. I have to regularly raise my legs to help with the pain and circulation and i've also put a wedge in my bed so that they're raised when I sleep (it helps a little I think!).

Ive been told that moisturising and massage can help with the v veins and circulation. The pain never goes entirely but i've found by managing it a lot better (thanks to carer support, family and medication) my life can go on a bit more normally than before. Wish you guys all the best. x


Thanks all for you answers, makes me feel better knowing i am not the only one. My Gp and consultant make me feel like its not that bad but they do not have to go through the daily struggle and frustation that you can not do what you use to do without experiencing so much pain and swelling.

All the best guys keep smiling xx


I'm sorry to hear you have had so much pain. My DVT destroyed some of the valves in my right leg so i get a very swollen leg/ankle, particularly in the summer or if i have to sit for long meetings. I take Furosemide to alleviate the swelling - bobbing up and down to the loo every 15 mins is a minor irritant.


I have had 3 DVT's in my left leg, and it now varies in colour from pink through the corned-beef look to purple. I get attacks of lymph-odema round my calf, ankle and top of my foot, which leads to cellulitis and then it goes very bright red. Meanwhile my right leg always looks white, much thinner, half the size and pale and interesting.

My theory is that I now have a full wardrobe of legs, which will go with most clothes and it is far more exciting than anyone with normal one-colour legs! There truly is a silver lining to every cloud, and fashionistas everywhere will be crying out for this look one day soon....just not yet, ay?!!!!


Hi. I had one very large DVT from my calf to my thigh which prompted my original APS diagnosis about 12 yrs ago. Other than a very occasional short sharp pain when i turn suddenly the only thing I am aware of is that the affected leg has been noticeably larger than the other and remains so.


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