I have been dx with Lupus Anticoagulant Disease. I take Lovenox 100mg bid as coumadin does not work for me. With coumadin I have been as high dose as 35mg and continued to make clots. I had emergency surgery to remove a 14 inch blood clot out of my left leg and pelvis in 2003. My valves are not closing or opening adequately. The pain is terrible. I am on oxycontin for pain with a back up of Lorritab when I break through. The leg cramps are so severe that I have to take 10 mg of valium and get myself into leg pumps to stop the pain. I kinda stabbled out for a while, until my joints starting swelling and thrombing. I recently saw a RA and she did sometype of Acid level test.
Is there anything that you can think of that can be done to relieve the swelling and pain in my valves and vessels? I know that whatever is going on it starts with my blood flow and vessels because I get severe headaches and if I get up without assistance or a walker many times I fall.
My father had similiar experience and died with a blood clot to the heart and COPD with Emphsema (smoker). He died at the age of 66. I am currently 53.
For 20 years I was dx with Antifactor 3 difficiency, untill I moved to Topeka Kansas. There I was told I did not have this difficiency and they did not know why my blood was clotting. That made me contact NIH and they gave me two physicians for consultation. ( Dr. Hare in Nebraska and another physician in Oklahoma (I have not seen)). I have had a Vena Cava Clipping (not a basket or filter) in 1980. I have developed collateral around the clipping so I now have no protection from PE's.
As a child I had perfect health. I eat right and use to exercise, but it is so painful I cannot stay on my feet for more than 1 hour at the latest. I have to keep my legs elevated 90 % of the time. I continue to make blood clots and aggervate my scare tissue.
I would be so grateful for anything you can offer. Kimosavie
Congratulations on persevering through a challenging problem. Why do you think that they used a vena cava clip instead of a filter? You may have profound venous hypertension and venous insufficiency causing leg swelling with pain. I would recommend that you have compression stocking to 40-50mm hg and a compression pump to alleviate your symptoms. You should consult your local board certified vascular surgeon. thanks and good luck
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