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Have Klippel Trenauny Weber Syndrome. Will it effect upper leg?

I suffer from KTWS (Klippel Trenauny Weber Syndrome ) and was diagnosed when I was 7 years of age. I am now 42 and have had multiple surgeries, skin grafts and amputation of the second and third toe because of ulcerations due to the disease. My most recent skin graft has not taken and the pain in my leg is unbearable, even with pain medication . My doctor and I are now looking into amputation of the limb (below the knee ). My questions is: With me having KTWS, how is this going to effect the upper part of my leg? Will I end up having more problems than this is worth. My boyfriend and I have decided that amputation is the best way to go, as well as our children. They don t want to see me in pain any more and I don t want to be either. I want to be able to swim with them, but have not been able to swim since I was little because of the ulcerations and the doctors afraid of any sort of bacteria getting in there, as I am prone to infections due the disease and have been on blood thinners for almost 3 years because I had developed a clot and almost died and was clsoe to death another time because of infection. I am scheduled to see my doctor next month and just want to be sure that there is nothing else that can be done. I am so tired of not being able to sleep because of the pain and having to wake my boyfriend up because of it. Tired of not being able to do things with my children, walk, ride bikes, hike, etc. Any suggestions would help. Thank you.
Asked On : Sat, 19 Jan 2013
Answers:  1 Views:  21
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General Surgeon 's  Response
Hi...this disease is due to abnormal connection between the blood vessels in th affected part of th limb...the part which is normal earlier will not develop these abnormal connections unless something happens to dont worry about your upper leg getting affected...
Post amputation you will be able to do most of the things u want to do...

Dr. Ashish Verma
Answered: Sat, 7 Dec 2013
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