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Klippel-Trenaunay-Weber Syndrome

Posted , 5 users are following.

Guest
Guest

Although only on one leg, this condition has embarrassed me all my life. I am 69 and some of the veins were removed at 19. Luckily I did have deep veins! I have had them treated several times since and always keep the leg covered. I had to haave the viens assessed before a total knee replacement and luckily the deep veins were OK. They are not quite so embarrassing now I am nearly 70.

[i:b92321460d]This message was automatically imported from the original Patient Experience[/i:b92321460d]

0 likes, 4 replies

4 Replies

  • Fuzz4U
    Fuzz4U

    Posted

    hey Guest,

    My name is Fuzz and I was diagnosed @ birth with A "" Large Birth Mark"......lol. 13 yrs later i met a vascular Dr that took a biopsy and said its was elaphantitus.....hahaha again. Finally went to the 4th (specialist) @age 15 and he instantly says KTWS.....new biopsy agrees. I am now 27yrs young and i meet a surgeon at UPMC hospital that wants to remove and or collapse afew veins in my leg and im not sure i want to do it. I read your forum and thought you could help me decide.. did it help with the pain and swelling? Pros vs Cons?

    • richard53369
      richard53369 Fuzz4U

      Posted

      Hi Fuzz4U

      I was wondering if you had sucess with Doc at UPMC. I live in the upmc area and would like the name of your Doctor.

  • philip60
    philip60

    Posted

    Hi All

    Most doctors have described my condition as a cavernous haemangioma. I went to an interventional radiologist based at Hammersmith Hospital, he diagnosed it as a low-flow vascular malformation. I looked this up online and found KTWS. When I saw the description and images I became pretty sure that KTWS is what I have. The Dr told me he couldn't do anything for me. I wasn't really that bothered, I've lived with it all my life (31 now), I can safely say I've accepted it, although for many years it made me frustrated and depressed. I don't know anyone with KWTS so it would be nice to get to know you guys if you're willing; just private message me.

  • suzana83
    suzana83

    Posted

    Hi Guest,

    I am a 30 year old female from Melbourne, Australia. I have KTS in my left leg also. I have developed arthritis in my knee and ankle over the past 7 years and it has gradually worsened.

    I will no doubt need to have a knee replacement sometime in the future, but the doctor has advised that I deal with my current pain for as long as possible before attempting surgery.

    How are you going with the knee replacement? Did you have any complications?

    I will also need to have an ankle fusion sometime in the future also.

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