Klippel-Trenaunay-Weber Syndrome - Personal Experience

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What is Klippel-Trènaunay-Weber (KTW) syndrome?

Klippel-Trènaunay-Weber (KTW) syndrome is a condition characterized by a triad of findings:

  • Port-wine stain or "birthmark" (capillary malformations in the skin)
  • Soft tissue and bony hypertrophy (excessive growth of the soft tissue and/or bones) most often involving a single limb.
  • Vascular anomalies such as varicose veins.
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Comment from: Becky McDonald, 45-54 Female (Patient) Published: May 05

I was born with Klippel-Trenaunay-Weber syndrome. It was obvious at birth that something was very wrong with me. I had a huge birthmark that covered my left, and side, and a huge vein that stood off my leg from my groin to my big toe. I was misdiagnosed from that point until today 5/3/2016. I have had extreme pain from it all my life, because of the swelling and blood clots. So far, I have had a total of 11 surgeries to remove veins and blood clots. Often the surgeries have made things worse. I now have 3 large aneurysms in the back of my legs, that have stagnated blood pooling in them and cause clots. I just had my first really bad superficial thrombophlebitis, though I have had many deep vein thrombophlebitis attacks. This has actually been worse than the deep clots, as it is much slower healing. I am glad, that at the age of 49, I finally have a diagnosis, but doctors just don't understand the constant pain I am in. I need a doctor who does understand this disease and can help. The cavernous hemangioma in the top of my foot makes it hard to wear shoes. Two of my toes are now purple at all times. I could go on and on, but why! I am so sorry all of you have to experience the same things as well! Please let me know if any of you find a good physician. Be well! P.S. The best thing I have found for the pain is my hot tub, and my doctor prescribed it, so we saved hundreds of dollars in tax on it.

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Comment from: Susan J., 55-64 Male (Caregiver) Published: May 27

My husband, has suffered with Klippel-Trenaunay-Weber (KTW) syndrome all of his life. We just returned from the Cleveland Clinic. For once we feel there may be some hope for all of his symptoms. He wakes up each day to severe cramps in his stomach, and bleeding from his bowels and now the gastroenterologist in our hometown says the entire right side inside of him is carpeted with the KTW veins. He was referred to a specialist doctor. We met with her this last Monday and will be returning to see the other doctors here that have experience with KTW Syndrome. We were told he is their oldest KTW patient. He has had several vein stripping surgeries as a child on his right leg. This did more damage than good but at that time, no one knew what they were dealing with. He found a doctor in Chicago and has had sclerotherapy which includes over 5,000 injections from under his arm to his toes. That doctor believed that this treatment has helped him and prevented the skin ulcers that can occur. His leg is in the best shape that it can be. Now we need to check out the veins in his colon and stomach to see if this is the KTW spreading. Please do not wait for treatments. The Cleveland Clinic seems to be a hope for us at this time. The place is amazing, appointments are scheduled quickly from when you call and very much on time.

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