Klippel-Trenaunay-Weber Syndrome , Experiences
Posted , 32 users are following.
I am looking for people who have KTWS. I was diagnosed since my birth. I have never really thought of it as an obstacle but as Im getting older (im 27 right now) I realise that how I do my daily things and how I deal with pain is not "normal". Where i am from there is not much known of this syndrome and I am very curious how other people deal with their KTWS in their daily life?
How do you deal with the pain, with work (or school?) , with relationships and your thoughts about the future and kids?
I have KTWS in my right leg and I have walked most of my life with cruched. It never stopped me from doing what I wanted in life, but slowly I get a little more obstacles.
Would highly appreciate if you would send me a message.
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2 likes, 54 replies
melba31366 cindy1
Posted
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cindy1 melba31366
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terri22 melba31366
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Hi Melba! I am 36 and have ktws. When I read your comment and seen that you suffer from back pain I just had to ask you a few questions...I hope you don't mind!😊 In the last 6 years I have had 5 back surgeries and as of today I'm still miserable. The doctors that I see have no idea what ktws is and when I mention that I am concerned that the ktws may be the reason that what works for normal people isn't working for me they just think I'm crazy. My right side is affected and most of the problems I have with my back is on the right side. I can't find anyone who can tell me whether or not my nerves, bones, muscles and ect can be affected by the ktws. Do you happen to have any information on any of that? If you don't mind me asking, where are you from? I'm in Alabama. Thanks in advance for any information you can offer me!
Olm terri22
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Hello terri22,
My name is Daniel, I wrote on this message board about four years ago. I'm 37 and I was diagnosed at birth with KTWS. I also suffered from back and hip pains. For me, it was because my right leg was bigger than the other. I was unable to stand straight meaning my back was out of line and causing me pain. When I was young, I had my left leg extended by a certain amount I still don't remember by how much, and I now wear a built up specially made shoe to make up the 3.5(ish)cm difference. I don't know if this helps. If you've been having operations on your back then there must be other complications that I am not aware of. But I wanted to write to you anyway.
I agree with you that it's quite frustrating that doctors seem to have a relatively small amount of knowledge on this. I'm not blaming them for there lack of knowledge. For me, I get the impression here in England that they're willing to learn more. Every hospital stay I've had in my adulthood has had visits to my ward with dozens and dozens of junior doctors with thier extra cold stethoscopes. Thirty I counted in my last visit which was many years ago. Quite intimidating.
But like I said, I don't know if my experiences help yours. But at least I can contribute to this forum and maybe/hopefully you guys feel like you're not alone with this syndrome's weird symptoms.
All the best, terri22. All of it.
D
terri22 Olm
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Hi Daniel! Thanks you so much for responding with your story! In my case my right leg is much bigger than my left. It's also 3/4 of an inch shorter. I've had lifts and shoes built to straighten me up but that was done within the last two years and when I wear the shoes I am in more pain than when I just walk the way I've walked for the last 36 years. I feel like because my body has adjusted to the difference in length that when I straighten myself up it is putting my back in a bind. I also think that walking the way I have my whole life has caused my back to wear out prematurely. As a child every doctor who seen me wanted to show me to everyone that they knew! I can remember droves of doctors and students coming through and looking at me and the doctor saying "look at this good because you'll probably never see another patient like this"! My parents have just always told me I was special! Lol! I really appreciate your feedback! I'm hoping someone on here can direct me to a great doctor! Have a great day Daniel!
samantha36188 cindy1
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cindy1 samantha36188
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yvonne71374 samantha36188
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shelley_27 cindy1
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cindy1 shelley_27
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cindy1
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lady36727 cindy1
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Im a 26 year old woman diagnosed with KTWS, i got that diagnose when i was 8-10 years old, i actually dont remember. No one had ever heard of it before and didnt understand what kind of syndrome this really was. In my teenage years i wasnt that affected by it. I have it on my right side, my arm, shoulder, chest and upper back, i also experince trouble and pain at lower back and right knee. It started about 3-4 years ago, it got terribly worse over night. Now i have all kinds of pain happening. Im swelling badly in my arm and hand, im developing more and more of these blisters, and my red wine stains are mainly located in the middle of my chest, but also have it on my right shoulder and upper back. Till this day i still have not met a doctor that fully understands this and what it does to me. Right now i cant even sleep cause of the pain, these blisters burn and hurt so much, and more of them keep coming.
This is the first time i've ever had anyone that understands this condition to talk to about it. Im so sick and tired of meeting doctors that does not know a thing and cant help me, i guess im a little depressed these days. The past 6 months ive been in daily pain and they cant do anything about it. My doctor is understanding and tries to support me in any way he can. I notice that it keeps getting worse the older i get, it has never been as bad as the last years. I miss my job, i miss my hobbies, very often even as simple things as lifting a grocerybag is impossible to me.. Im sorry for my grammer and spelling mistakes, english isnt my native language.
cindy1 lady36727
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sandy1986 cindy1
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thanks for letting me share
sandy
cindy1 sandy1986
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