Klippel-Trenaunay-Weber Syndrome Support Group

Klippel Trenaunay Weber syndrome (KTWS) is a medical condition in which blood vessels fail to form properly. Although the cause and processes surrounding KTWS are poorly understood, the disease is diagnosed by the presence of at least two of the symptoms on a single extremity: A distinctive port-wine stain with sharp borders, Varicose veins, Hypertrophy of bony and soft tissues that may lead to local gigantism.

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Trying to find a physician

Hi, I'm Lauri and new here. I have a 30 y/o son with KTW primarily affecting his lower extremities. He had two surgeries in the early 80's at the University Of Michigan with Dr. Markley, a plastic surgeon, do do ray amputations of 5 toes and debulking. His care was then transfered to Dr. DeVito, an orthopedic doctor who removed growth plates and performed reconstructive surgery. Unfortunately, Dr. DeVito passed away several years ago and he has not seen a Dr. primarily for his KTW. His left lower extremity is more involved than his right and lately has had worsening of symptoms...particularly swelling, pain and sever skin dryness. A month and a half ago he developed a pulmonary embolism and can't help but wonder if his KTW may have played a part in this development. No DVT was found and no one seems to know how he developed the pulmonary embolism. He was refered to a vascular surgeon who is not familiar with KTW. Is there a physician in Michigan who my son could be referred to to manage his condition? I would appreciate any suggestions or direction at all. Thanks! Lauri

Replies

deleted_user
deleted_user

I know of A doctor in Minnesota and cleveland. ir you are will to travel. And yes KTWS may have played a big part in the blood clot. Patients with KTWS are at high risk for them.
deleted_user
deleted_user

Lauri, I have k-t and the same thing happend with me. I have had 2 pulmonary embolisms and they didn't find minde it my leg either. I have right arm and shoulder involvement. Basically the whole right side of my body is bigger. Hope this has helped.
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