Vein Damage?

[J-Okr]

I was wondering if there's anyone who could help me - I've been run through every kind of scan and test to try and figure out what the problem with my knee/leg is. 

Going on a year and a half now recovering from a serious crush injury to my left knee/leg, and I still have a fairly large swelling on the lower part of my knee/top of my calf.
 
After my crush injury a massive DVT was found all the way from my lower leg into my thigh.  I did the usual treatment of coumadin and weekly blood tests for 6 months.  However this week I saw my knee specialist again, and he said it's possible that the remaining pain and swelling is lasting damage from the DVT?  I've had follow up ultrasounds, and the DVT is gone, no traces of a clot in my leg.  He said b/c it was so large that it possibly stretched out the pores, and the vein can't hold the fluid any more?  I can't remember exactly what he said, but also in the next week or so, I'll have to go back for another ultrasound to check the integrity of the veins, but has anyone heard of this or been through it?  what's the treatment?

Thanks!!
J.

[jane77]

Yes - I have this from my DVT.  The pain at times is like another DVT and never seems to get better.  I eventually saw a Vascular Surgeon who dx me with Post Thrombatic Syndrome and told me I had to wear compression stockings forever.  The deep vein valve is permanently damaged and there is no cure.  I did that for a while, then heard about Nattokinase NSK and since then the leg and pain has been near normal and I don't need stockings. 

Have you been tested for Factor V Leiden ?   www.fvleiden.org      You may be at high risk of another DVT from the damage.  I heard 30% but that may be wrong.

[J-Okr]

Thanks so much for the reply!!
 Did you have odd swelling and very very tender spots on your knee or leg?  I have a swollen area roughly 3cm on my leg and the area right above it is very painful.  The knee specialist I see basically told me that they can't figure it out, so they're going down a list of theories.  That list is getting pretty small now and he's sending me for another ultrasound, and possibly setting up an appt with a vascular surgeon....I'm really hoping this isn't what the problem is!! I don't like the idea of something that can't be fixed!!

Did you vascular surgeon tell you why they can't fix it?  If they can do vein bypasses on other parts of your body, it seems strange that it can't be done on a leg.

 I honestly can't say that I know what the pain of a DVT is - the pain in my leg/knee hasn't really changed much from the time of the accident until now - I didn't notice any difference in pain levels from the accident, to when they found the DVT, to now.

Thanks for the info on FVL....Next check up I'll have to ask my Dr about it.

[jane77]

I had a lump from the DVT for a long time. I can't recall exactly now but it was months - maybe a year. And it was very tender. My Dr had told me to get physio - but when I saw the Physio she refused to massage that area. She said it felt like a 'egg' was still in there.  It was about 2 years after that - that I got the dx of Post Thrombatic Syndrome as the whole leg was swollen and Doppler Scans were all normal.  I could feel the lump there but it was not visible on the Scan at that stage.   Then after that is when I started Nattokinase and the lump seems to vanish over a year or so.  The area is still very sensitive - but no lump.  My understanding is that coumadin does not dissolve clots but keeps the blood thin and prevents them getting bigger. I have also been told that Scans are not 100% accurate for showing clots. Did your leg feel better when you were on coumadin ? Make sure to tell your Dr if it was.