yogini Posted January 5, 2013 Report Share Posted January 5, 2013 So I've had swelling in my right leg for a few years. I noticed this a few years after POTS when my right shoes started getting really tight. My right ankle and the the top of my right foot swells up, turn red, etc. I went to my GP a few years ago and he acknowledged it and said to ignore it.Last year at my checkup, my cardiologist that I see for POTS asked me about swelling and I told him about my right foot. He suggested some kind of test (sonogram?) to see if my veins were leaking. One year later, I had a checkup to get refills for my prescriptions and he brought up the test again. They happened to have an opening right away, and I had the test. I was expecting it to show nothing, but sure enough, there is leakage of veins in my right leg. This is actually the first test (other than the TTT) that has come back positive for me. The dr said the leakage is enough to cause my foot swelling, but he wants to investigate further to see what is happening in my pelvis area. - I may have to have an xray and/or MRI. I am all for finding out about this further!There is some kind of rare syndrome common in women where the arteries and veins cross;supposedly not serious. He doesn't think this is related to my POTS, but I am wondering if it is. If my veins are leaking, wouldn't this reduce blood flow?I was wondering whether any of you have been diagnosed with leaking veins? If so, what diagnosis did you get and what was the treatment? Thanks! Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted January 5, 2013 Report Share Posted January 5, 2013 I haven't been diagnosed with leaky vins but I do have vein issues that no doctor has followed up on. Basically they swell up immensely when I'm hot or tired from walking and it started when I got pots so I drink there's a correlation. I also g it in my knees and severely in my hands. I also wake up with swollen hands. It's very uncomfortable. But no doctor seemed concerned which is weird. Keep us updated on your vein issues, so you maybe have pictures ? Quote Link to comment Share on other sites More sharing options...
sue1234 Posted January 5, 2013 Report Share Posted January 5, 2013 Anytime I sit, my left foot turns really blue, but not swollen. Did your foot ever turn blue? I'm always thinking that my veins must get compressed or something up in my thigh/butt area and don't let the blood flow smoothly. Who knows!Keep us posted! Would love to know what you find out. BTW, do you remember what the vein/artery thing is called? Quote Link to comment Share on other sites More sharing options...
TCP Posted January 5, 2013 Report Share Posted January 5, 2013 Not sure if I had the same thing, but when the peripheral and autonomic neuropathy got really bad and I couldn't walk, my left foot went very blue like bruising. It eventually went away but the blood vessels in that foot are narrower now and blood flow not so good. Quote Link to comment Share on other sites More sharing options...
yogini Posted January 5, 2013 Author Report Share Posted January 5, 2013 (edited) Sue, I just looked it up. It's called May-Thurner Syndrome.I used to have very bad pooling in both arms and legs when I first got POTS. They would turn blue/purple. I still get that, but not as bad. This issue with my right foot is something different than "typical" POTS pooling. The reason I know that is because it happens only in one foot.It is interesting that this dr wants to investigate.he actually wants to run a bunch of other tests too on my exercise ability, etc. I will definitely keep you posted. Edited January 7, 2013 by yogini Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted January 5, 2013 Report Share Posted January 5, 2013 I wish I could cut and paste in the forum but I just posted under the current thread, "leg pain" what sounds much like what you are describing without the change of color to the skin. I regularly get Orthostatic edema that is always worse on my right side. Weird that you just posted about this too. What is the kind of test you had done to prove you had "leaky" deep veins? Quote Link to comment Share on other sites More sharing options...
yogini Posted January 6, 2013 Author Report Share Posted January 6, 2013 I want to say it was an ultrasound. Tis particular office treats vericose veins and i think that's what they have the equipment for, They put cold gel on my leg and had a little probe with more gel on it. I had a pelvic ultrasound once and the equipment looked similar. They pushed on the veins in my leg with the probe while I was lying down and also standing up. When I stood up I could see what was happening on the screen, which was cool The test took forever. I am still shocked that something showed up on it!The dr said the ultrasound (or whatever it was) didnt give detailed enough info and I'd have to have an X-ray/MRI to get a better idea of what is going on...I will say, though, that I don't have any pain in my swollen leg. The only indication is that my right shoes started feeling a lot tighter or stopped fitting. Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted January 6, 2013 Report Share Posted January 6, 2013 Can describe what you saw on the screen? Did it only leak when standing? Was it as if the entire vein was super permeable or was it leaking only in certain spots?I'm headed to Vanderbilt next week. I will mention it to them and see about getting an ultrasound. Interesting. Thanks. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 6, 2013 Report Share Posted January 6, 2013 I get swelling in both ankles, that is relieved overnight, but gets worse as the day progresses and the more I sit. My left is worse than right. I have mentioned this to a dr but I am told it is a normal thing with aging Still, I also wonder if there is any connection to POTS. I will be curious what you find out or are diagnosed with. Quote Link to comment Share on other sites More sharing options...
yogini Posted January 6, 2013 Author Report Share Posted January 6, 2013 (edited) Actually I couldn't see any leakage. The leakage is in my right abdomen/hip and I was lying down for that part, so i couldn't see the screen - not that I'd be able to tell leakage if i saw it. The graphic is pretty technical. I was only able to watch when I was standing when they did my lower leg. I could see them identifying and measuring veins, and stopping and restarting blood flow. A few times they had me do the valsalva maneuver, which the dr had requested. Cool to observe, that's all... Edited January 6, 2013 by yogini Quote Link to comment Share on other sites More sharing options...
micheller Posted January 6, 2013 Report Share Posted January 6, 2013 I always swell in my right leg. My feet are usually a purple in color but it doesn't get darker. I also have numbness in my right foot and goes to just above my ankle. My left leg it 'normal'. I asked my dr about this. She told me my swelling is from sleeping on my right side which is wrong because I don't always sleep on that side and it's fine in the morning. But if my foot is down, it will swell. She also said my numbness is from a damaged nerve during pregnancy. I don't believe her but meh. I think she wanted to give me a bs answer and move on. Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted January 6, 2013 Report Share Posted January 6, 2013 Weird how a number of is have issues with our right leg... Hmmm Quote Link to comment Share on other sites More sharing options...
Altruism Posted January 6, 2013 Report Share Posted January 6, 2013 +1 right leg swelling weirdo!POTS hit me immediately after I gave birth. The very first thing that I noticed after that was the swelling in my right foot. It was twice as big as my left one! I was told it's probably due to the epidural (?), but I seriously doubt it, as otherwise it should have been seen in both legs. Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted January 8, 2013 Report Share Posted January 8, 2013 So how many of us have swelling in the right foot or leg? Are we all female? Is this a relevant trend? Hmmm Quote Link to comment Share on other sites More sharing options...
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