Patient Comments: Klippel-Trenaunay-Weber Syndrome - Personal Experience

Please describe your experience with Klippel-Trenaunay-Weber syndrome.

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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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: notsurewhatihave, 25-34 Female (Patient) Published: April 11

I have had this 'birthmark' since I was born. Doctors weren't aware of it when I was born until they had bundled me up and seen half my body normal color and half my body blackish from lack of blood flow on the left side. Well, as years went on and test after test after test, no one has ever given me a name, or an actual 'Klippel-Trenaunay-Weber syndrome is what you have.' And this is why the capillaries don't open as much or as often as a normal person my age causing me to have this port wine stained skin as they call it. I have no major parts of my body larger than the other, like some are fatter or wider. My wrist on my left side my thumbs can wrap around and overlap but on the right side they just meet. My hips are bigger on my right side than my left.

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Comment from: princess, 35-44 Female (Patient) Published: July 24

I was diagnosed with Klippel-Trenaunay-Weber syndrome (KTWS) as a child with a port wine stain on my right leg. As time has passed the condition has worsened and I was diagnosed as KTWS in 2011. It now has spread over the whole of my right side of my body. I suffer extreme pain in my arm and leg, I am yet to get any help with this, as such little is known. My general physician is great, he tries to help but is as unknowing as me on the condition. It is a scary and painful condition to have so if anyone has had any luck with getting the right help please I hope to see here.

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Comment from: Nerak25, 35-44 Female (Patient) Published: March 16

I have Klippel-Trenaunay-Weber syndrome (KTWS). I was diagnosed at 29, when I became symptomatic. It was a long tiring painful road getting to the diagnosis as well. I found it at an interventional radiologist's. I went through many procedures to close some of the deformed replicated veins. The pain is still present and my debilitating symptoms gone for now. The downside is fixing one thing is it starts another. I am so much better now I can deal with the rest. We walk a lonely road but stay positive and keep fighting.

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