…and I swear I will get pics up, seriously! The holidays are killing me, though. Honestly, why on earth does it have to be this stressful?? Thankfully, I’ve gotten a good leg (no pun intended!) up on my shopping. It’s going to be an Amazon.com kind of holiday!
So I noticed something this morning. I got up in my usual fashion around 6:30 this morning – and of course, usually the first thing you do when you wake up is you go to the bathroom for a nice, long, morning pee. As I sat there this morning, experiencing relief, I looked down at my PWS foot/ankle. It was bright purplish-pink – no blueness, no dark purple, no veins bulging. It looked just like it did when I was younger! Excitedly, I quickly ran back to bed to show Andrew, and I told him that I was certain it was lighter and pinker was because Id only just woken up and hadn’t had a chance to stand on it too much. I got back out of bed, and commenced showering, getting ready for my day, etc. – and in the one hour it took me to get ready, the birthmark was dark again, and blue veins reappeared in my birthmark around my ankle.
So… the blood really is pooling in there, I guess. Just something else to tell the doctor, I suppose.
I should start a list, maybe?
December 29, 2009 at 11:22 pm |
Hi,
Just came over from birthmark.org to check out your blog. We have similar stories … I am 36 and have a PWS from my left hip down to the very tip of my big toe. I have 3 children and developed increasingly large varicose veins with each pregnancy. During my most recent pregnancy, the veins got really bad really quickly (large, painful, swollen).
Fairly early on in the pregnancy I went to see a vein specialist and for the first time in my life heard the term “Klippel-Trenaunay” as a potential diagnosis. I do not have really noticeable enlargement of the leg, but it is longer and wider in circumference.
Later in the pregnancy I developed DVT. The clot was suspected to be quite large – from the knee up into the pelvis. I had to start injections of anticoagulants twice daily and am still taking them (my baby is almost 6 weeks old). I am scheduled to have an MRI on Thursday (with contrast) to check out what’s going on with the veins.
I’ve had to talk to lots of people (many of them MD’s) to find someone who’s heard of KTS or is aware of the correlation between my PWS, the potential KTS, and my DVT (lots of initials there). I wanted to tell you that I’ve had the most luck with a “vein doctor” at a Vascular Surgery clinic. Within minutes of meeting me, he mentioned KTS and outlined a plan for moving forward.
The thing he stressed most for the present time is that I wear compression hose. I wore them throughout my pregnancy and it sounds like I will be wearing them indefinitely.
I’ll look forward to hearing how your February appointment goes. All the best to you!
Warmly, Sara
December 30, 2009 at 6:05 pm |
Sara – thank you SO MUCH for your very thoughtful (and enlightening!) comment. You’re right, we do have a lot of similarities! It is so bizarre to me that we, in our 30s, have walked around with these things all our lives without it occurring to primary care doctors that it’s a red flag for KT syndrome. My swelling on my leg isn’t really noticeable, either, except when you look at my toes; I guess docs figure that as long as everything appears okay, the birthmark must be just superficial. The lack of awareness is staggering. Thank goodness you found someone to help you when you did! I’m hoping that when I see the dermatologist, he’ll recognize the PWS for what it is and order the right testing.
Please do keep me posted as to how your MRI goes tomorrow – and congratulations re: your baby!