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

Question:

Please describe your experience with Klippel-Trenaunay-Weber syndrome. Submit Your Comment

Comment from: Pauline, 19-24 Female (Caregiver) Published: July 13

My daughter has been diagnosed with Klippel-Trenaunay-Weber syndrome. She has a Mongolian birthmark on her left buttock, it takes up the whole 1/2 and has moved down her leg a bit. She is undergrown left leg and has suffered pain her whole life. We are in Australia and have no help.

Comment from: Vivian. , 55-64 Female (Patient) Published: May 14

I have Klippel-Trenaunay-Weber syndrome in my right leg and have had over 10 corrective operations to de-bulk between 1969 -1979. I woke up 2weeks ago with a cold abdomen, my husband had to warm up my sides and roll me out of bed. Once up I had and still have ribs, back and tummy muscle pain. The doctor thought I had appendicitis problem and sent me to Accident and Emergency. They couldn’t find anything and gave me Laxido which has helped me to go, but only if I keep making it. It has been 2 weeks and the pain in the rib has moved around to my left side this week. Tummy muscles have become really heavy to move and painful. Naproxen has helped to take the edge off the pain. It is ten times worse when I’m not busy at work.

Comment from: Davidf, 55-64 Male (Patient) Published: March 20

I was born with Klippel-Trenaunay-Weber syndrome, with a large port wine birthmark on my left leg and many deep blue veins. The clinic diagnosed my condition in 1974 when I was 11 years old. My left leg was 2 inch longer than my right leg. When I was 15, the doctor removed the growth cells from the two leg bones on my left leg (your bones only grow on the ends). My right leg kept growing and now my legs are the same length. Attempts to remove the port wine stain were not successful. And the stain can come back. Skin is thicker on the leg than the face. It was recommended that I have dark blue veins near the surface removed. However, a second opinion reached a very different conclusion. The doctors shot contract dye in my toes and determined that the valves in my veins worked in reverse. Removing the veins would likely cause my leg to atrophy and eventually would have been amputated. One other point, in the early 1970s some doctors wanted to put electrodes in the bones on my right leg to make it grow faster. My doctor outright rejected this idea and said that it would not work, sparing me from needless treatment.

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.

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.

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.

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.

Comment from: angela H, 45-54 Female (Patient) Published: June 24

I have Klippel-Trenaunay-Weber syndrome (KTWS) but was never told this as a child. From age 6 to 16 I went every year to have x-rays done because one of my legs was smaller. Never was my family told I had KTWS. I was told that a lot of people live with 1 inch difference in legs and it is no big deal. It was not until a few years ago I was told that I had KTWS, because there is no pulse on my left ankle (my little leg which is the KTWS leg) with the vein collapsing. The shock that I had this all my life and never knew it! So this was why one leg is smaller over an inch than the other leg, this is why I have two different shoe sizes, this was why I have a birthmark over half my body, this was why the veins are bad in my little leg, and this was why I have big brushes that just appear. I have a rare form because it is my smaller leg not my longer leg. Nothing helped the pain when I was young. It got better as I got older but it still hurt from time to time. Heating pads are the only thing that help with the pain. I wrap my leg up in a long one. I fall down every so often like my legs just stopped working; circulation is bad as well. Now I am having issues with the pain in my foot and ankle. I post this to let others who are dealing with this know that you are not alone. I wish that people could understand it is a lot to deal with. It gets old being asked what is wrong with my leg, why I am limping. Sorry to go on and on. I would love to be part of a study if that would help others and bring a light to this rare club we are part of… thanks for letting me post.

Comment from: JessC, 25-34 Female (Patient) Published: February 10

I was born with KTPWS (Klippel-Trenaunay-Parkes-Weber syndrome) and diagnosed at the age of 5 years old. I have suffered through pain my entire life and as I get older the pain has gotten worse. I have muscle detrition in my leg and I have yet been able to find a doctor who is knowledgeable or can treat my disease. Each year my pain gets worse, swelling gets worse, etc. It’s making it difficult keeping up with my children.

Comment from: Crystal, 25-34 Female (Patient) Published: April 08

I have had Klippel-Trenaunay-Weber syndrome since I was diagnosed as a child. I have been frequently told that it shouldn"t bother me but the pain has always been there. It has gotten worse as I"ve gotten older and I"m so tired of hurting. It swells so there are bumps on my leg and it will randomly quit supporting me as I walk or stand.

Comment from: Basketjudi, 55-64 Female (Patient) Published: September 17

I am looking for a physician. Because of Klippel-Trenaunay-Weber syndrome I have had increased issues with swelling, and vascular issues recently.

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