Wow, not sure how I found this website but am happy I did. I am going to be 52 this year. When I was 37 I woke up one day with a solid DVT that went from left ankle up to the top of my stomach. I ended up being in three hospitals for a total of six weeks. Diagnosed with Factor V Leiden and May Thurner Syndrome and some protein something. I have a 14″ stent in my iliac vein in my stomach to keep it open as without it, my iliac vein would rub against my iliac artery and cause another blood clot. It took three rounds of thrombalitic medicines, three trips to ICU, and six weeks in the hospital to get the clot broken up. I will be on lifelong coumadin therapy and have slept with my legs elevated since 2002. I wore compression for the first several years and then quit, but I’ve had to start wearing them again because I have such terrible pain, especially at night.
Recently, my husband noticed the back of my leg looked different – a network of blue veins underneath my skin – really strange looking. Because I’ve had such terrible pain with my bad leg, I made an appt. to go back to see the interventional radiologist who took care of me since 2002 and off and on since. He acted like he didn’t know what the condition was. Sent me home and told me he’d recheck me in six months but since he didn’t seem to know what it was, I’ve been obsessed with trying to figure it out.
After a lot of time reading and studying, I am scared and worried but am pretty sure I have LV, so I’m hoping you can help answer some questions I still have:
1.) Everyone keeps saying if you have Factor V Leiden, it’s the opposite of LV, or it works against LV? I’m not sure I’m following why that is. The Factor V causes blood clotting and I take coumadin to keep my blood thin. What affect does that have on LV?
2.) I have pain in my leg, terrible at night or when I’ve stood for a while or sat too long. The only thing that feels good is a heating pad. Because of the blood thinner (a high dose of 10 mgs/day), I’ve been told not to take NSAID’s because they will destroy my stomach, so I do without any except when I just can’t take it any more. Do you guys have the kind of cramping and pain. I used to refer to them as growing pains but sometimes they’re sharp stabbing pains, too.
3.) Right now I have no ulcers – thank you, God, but everything I have read it sounds like the LV rash/network of blue dark veins under my skin might be the predecessor to future ulcers? To be truthful, reading all of this really scares me about the quality of life that’s ahead of me. When I first had my DVT in 2002, I was 37 and still very active. Now just 14 years later, my quality of life has changed. It’s not just that I’m older. I have so much more pain and my legs feel like their 30 years older.
4.) It’s getting more difficult to work because I don’t sleep well at night any more. Are you all still working? Do any of you receive disability? I’m not sure how you would work with the ulcers you describe. I’m so sorry to hear about them.
5.) I’m not sure what doctor to go to first? I have a brand new internal med doctor who I could try but after the interventional radiologist acted like I was from Mars, I kind of want to make sure I find a doctor that has a clue about what this is. Fortunately, I live near St. Louis, MO, so we have some incredible hospitals that would offer wound care, etc., if that becomes necessary down the road. Do I try to find a dermatologist for this. It seems like it’s more a vascular disease but everyone is using a dermatologist so I’m not sure about who first.
I look forward to learning from all of you. Thank you.