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-   -   Port wine stain on left leg, and Confused (http://birthmark.org/board/showthread.php?t=1994)

garcia03 07-20-2006 04:33 AM

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?

pinknolegirl 07-24-2006 06:46 AM

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!

nickbar 07-24-2006 05:05 PM

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

aidanandjack 07-25-2006 08:49 PM

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

AMY36 09-22-2006 09:18 PM

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

Michele 11-14-2009 10:55 PM

Please contact me ASAP!
 
Quote:

Originally Posted by garcia03 (Post 10663)
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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