Port wine stain on left leg, and Confused - Vascular Birthmarks Foundation Forum
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  #1  
Old 07-20-2006, 04:33 AM
garcia03
 
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Default Port wine stain on left leg, and Confused

My Daughter is 2yrs old with a portwine stain covering her left leg, from her ankle to her bottom of her buttock to half of her private area. Her first visit to a Derm. was about when she was 3months old had a MRI done and only found that she had abnormal veins. So as time passed i noticed that her left leg wasn't longer or had any overgrowth but is the same length as her right leg but it is 4 inches thinner then her rightleg. I was reffered to a Orthopeadic clinic in Central california. I went to the Orthopeadics today and just said that she had extensive portwine stain and she Hypotrophy and I would have to see a plastic surgeon. I'm confused, Should i get a second opion? Could she have KTS?
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  #2  
Old 07-24-2006, 06:46 AM
pinknolegirl
 
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Default hi

Hi, I'm 19 and have KTS... I've had the PWS and Lymphedema my whole life but was just given the diagnoses of "KT" about 5 years ago. From what I have read, it doesn't sound like your daughter has KTS, because the affected limb is uusually enlarged, rather than thinner than the other limb(s). Hope this helps!
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  #3  
Old 07-24-2006, 05:05 PM
nickbar nickbar is offline
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Hello,

Email Dr. Delfinin on ask the expert. I am not sure if you are familiar with Casey Martin (I think that is his name) the pro golfer that won a case against the PGA...they had to allow him to ride in a cart because he did not have the strength in his leg to walk 18 holes. He has a similar situation as you describe with his leg.

Good luck and keep us posted.

Corinne
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  #4  
Old 07-25-2006, 08:49 PM
aidanandjack
 
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Regarding your daughter,

My son was born with stains covering his entire body in one degree or another. He was diagnosed with CMTC then undiagnosed. They have considered his condition a "mystery" as of now. Very frustrating. He has been tested for glaucoma, brain tumors, heart defects. Everything is fine. The genetisist at one point mentioned KT to us. Then yesterday he was seen by another specialist. Ped derm. Who said he does not have either CMTC or KT. What she explained of Klippel Traunany does sound like your daughter. She said that it usually is one affected limb. But she did say the length is usually a couple centimeters difference. There are developmental issues associated with KT. Is your daughter on track?

I'm interested in knowing about your situation. I know the frustration and worry of "not knowing".

Take care. You can email me personally at sskidmore@aspenmp.com

Sincerely,
Shannon
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  #5  
Old 09-22-2006, 09:18 PM
AMY36
 
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I would like to speak with you.My Son just had his 8th surgery on his leg,foot,scrotum, and buttocks.Please contact me as I have a tremendous amout to discuss. You may e-mail me at:michele36@comcast.net (if you prefer)Thank you, AMY
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  #6  
Old 11-14-2009, 10:55 PM
Michele Michele is offline
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Join Date: Nov 2009
Posts: 1
Default Please contact me ASAP!

Quote:
Originally Posted by garcia03 View Post
My Daughter is 2yrs old with a portwine stain covering her left leg, from her ankle to her bottom of her buttock to half of her private area. Her first visit to a Derm. was about when she was 3months old had a MRI done and only found that she had abnormal veins. So as time passed i noticed that her left leg wasn't longer or had any overgrowth but is the same length as her right leg but it is 4 inches thinner then her rightleg. I was reffered to a Orthopeadic clinic in Central california. I went to the Orthopeadics today and just said that she had extensive portwine stain and she Hypotrophy and I would have to see a plastic surgeon. I'm confused, Should i get a second opion? Could she have KTS?
I have been searching for 6 years for a child w/ the EXACT SAME PWS as my Son. Please contact me- I would love to talk! micheledream@hotmail.com
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