Klippel-Trenaunay Syndrome is a congenital circulatory disorder characterized by hemiangiomas, arteriovenous abscesses, and varicose veins, usually on the limbs.
Hi – my name is Noreen. I’m a 55 year old woman with KTS. I’m happy to answer any questions you have. There is very little information about KTS – especially from a patient’s perspective. Imagine how much less information was available 55 years ago! My right leg is affected, from toes to mid-thigh. Like Patty, I was told I had “a birthmark”, “extra veins”, “bad veins” a “hemangioma”, etc. Finally, in adulthood, I read an article about KTS, and asked my doctor “is this what I have?” (the answer was “yes” ). I had numerous port wine stains on my leg at birth. Many disappeared with time, but I still have some large ones near my knee & ankle. I started walking a little later than usual (13 months), and in hindsight I wonder whether that was due to the discomfort associated with my leg. For the first couple years, I didn’t wear any compression on my leg. At about 3 years of age, I started wearing a compression bandage, and continued until my mid-teens. In my mid teens, I was measured for a compression stocking, and have used them ever since. My leg always tired easily, and was very sensitive to touch. However, I could rest with my legs elevated & return to some level of comfort. At about age 30, I had the short & long saphenous veins removed, mostly because of the risk they presented. They were many times larger than normal, with no valves – so the risk of uncontrolled bleeding was significant. I didn’t know then that surgery (and the scar tissue that develops afterwards) can impede lymphatic drainage. I no longer could get immediate relief by elevating my legs - and the swelling in my leg gradually increased. The really unfortunate part is that I could have taken action to prevent the complications – but I didn’t know, and my doctors didn’t inform me. For several years after surgery the swelling & pain in my leg increased. Then I found a lymphodema support group, where I learned many of the techniques that have helped me. I’ve improved a lot, but I’m not back to where I was pre-surgery, and never will be. I am, needless to say, a big advocate for prevention! If I can help you and your daughter avoid or delay any future problems, I’m happy to share any knowledge I have. If you’d ideas about caring for a child with KTS –you can email me @ firstname.lastname@example.org. Or, if you’d prefer to talk – just email me & I will send you my phone #. All the best! Noreen
I found the website for support group it's www.k-t.org also Erin Rosas is a KT Advocate. She has a website. I just googled her name and kt advocate. I spoke with her a few years ago when I was having the heart palpitations
My mom and dad were told I had a "birthmark." I never had problems until I was beginning to walk and would have lots of pain to the left foot. Pain so severe I would limp. Mom brought me in and the pediatrician said the birthmark was a "hemangioma." I continued to develop and grow. Pain was severe at times to the point I would have to limit my ambulating. When I started puberty pain was more frequent and would always be worse before my period. I had very irregular periods 2-3 a year and developed increased facial hair. Mom brought me to her gynecologist who wS aware of my "hemangioma." He put me on Premarin and progesterone. This regulated my periods but I developed phlebitis in the L calf when I was 16. Doc took me off and I continued with irregular periods. When I was 24 I had severe L calf and foot pain. Was referred by primary care doc to a new vascular surgeon in town. This was the first time I was actually told that I had KTS. He did vascular studies of the L leg and was unable to detect blood clot. He became my provider for my KTS. He had me take daily Aspirin and prescribed a compression sock. He also suggested elevating the L foot above my heart several times a day. I continued with the activities above except for the aspirin, and had 3 children and only suffered periodic pain to l foot. When I was 35 woke up with severe pain in L foot. Couldn't even bare weight. Saw my doc and had Doppler that detected a blood clot at the base of the 2nd toe on my L foot and one on the sole of my foot. Odd area to get clots. Pain was so severe I was admitted and doctor surgically removed the clot at base of toe. He left the one on the bottom of the foot. I was heparanized then started on warfarin. I was changed to daily Aspirin and have not had any further issues with phlebitis or clots. I do wear the compression sock and take Aspirin. Doctor stressed importance of keeping the foot protected(no bare feet d/t concerns of cuts and bleeding because of the vascularity of the foot There were no support groups around. I did read about a support group in Minnesota but did not get involved. I have had issues with supraventricular tachycardia. Not sure if there was correlation with that and KTS. I believe there was a study being done regarding that. I live in Green Bay, WI and if you ever want to talk you could email me. Pfarley@new.rr.com and I can send my phone number. I just learned to live with the KTS, but it was embarrassing and kids/adults would freak out when they saw it. Needless to say I did not like swimming because my foot and leg would be visible for all to see. I do not know anyone else with this.
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Still researching and she will be having surgery soon to stop her leg growing.
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