Video Q&A about Vascular Malformations and Related Syndromes

My son was born with several hemangiomas. One was quite large and looked like a bruise. We were told they would fade as he grew. He is almost 18 and they have grown with him. They may have changed shape a bit, but are still present. Will he always have them?

My daughter has quite large hemangioma on her ankle that is now ulcerating (1cm diameter). We have been using Timolol drops for a week now and I see a slight change. Should we stick with Timolol? Also, should we use anything on the actual ulcer?

My son was born with a VM that went from his left knee, up his thigh and hip and across the lower back. 70+ treatments in Denver between age 4 and 12. More treatments at Mayo at 17 before his knee surgery. He now has a spot on his hip that is getting larger and protruding. My questions are 1) are there new treatments out yet that are less damaging to the surrounding tissue? and 2) Will this ever end? He is now 24 and looking at more treatments. 20 years of this! Looking for hope for a "normal" future for his. Thank you.

Hi. My daughter developed a hemangioma a week after birth on her forehead. It went away by kindergarten. She is now 30 years old and has an extreme case of Raynaud's that encompasses her entire body. On a daily basis it looks like someone has poured scalding water on her. It started out with affecting her fingers and toes at age 13. Then moved to her knees and chest. Now it is her entire body. Is there anything that can be done?

Thank you for your questions @srh16 @xvekab @sheiladee and @windwalker. I'll be happy to ask your questions during the broadcast.

My son is 17 with a VM on his right leg from toes to pelvis with no deep vein involvement or lymph. His leg is less muscular on that side, veins having replaced muscle, but he has no swelling. His coagulation studies are irregular. He has had sclerotherapy/EVLA from the age of 5, but now at age 17 with adolescence the VM has become quite aggressive and his mobility has been affected. Since age 5 he has had 27 treatments with an excellent specialist and is looking at more. As in another post, what are the emerging treatment options available to him?

62-year-old female diagnosed through MRI done as precautionary for minor bump to head. Discovered small cavernoma. No symptoms. No bleeding. NS said probably there since I was a child. Common? Should I be alarmed? Also found small meningioma in different location. Also, told no concern. Thanks for having this meeting!

Hi @paulineaustralia,

I’d like to invite you to join us today, Dec. 7 at 1:00 p.m. CT (USA) for a live Video Q&A with Dr. Angela Mattke, pediatrician and Dr. Megha Tollefson, director of the Vascular Malformations Clinic, about vascular malformations and related syndromes, including Klippel-Trenaunay Syndrome.
Simply click View & Reply in the email notification to see all the details and to sign-up.

Dr. Mattke and Dr. Tollefson will answer questions live. Feel free to post your question below, before or during the presentation.
You can participate in the Video Q&A on Connect by returning to this page; the video will be shown at the top of the page. I hope you can join us.

Hi @drdung86

I’d like to invite you to join us today, Dec. 7 at 1:00 p.m. CT for a live Video Q&A with Dr. Angela Mattke, pediatrician and Dr. Megha Tollefson, director of the Vascular Malformations Clinic, about vascular malformations and related syndromes, including Klippel-Trenaunay Syndrome.
Simply click View & Reply in the email notification to see all the details and to sign-up.

Dr. Mattke and Dr. Tollefson will answer questions live. Feel free to post your question below, before or during the presentation.
You can participate in the Video Q&A on Connect by returning to this page; the video will be shown at the top of the page. I hope you can join us.

THANK YOU so very much. Wonderful session, I have learned so much.