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-   -   Venous Malformation support (http://birthmark.org/board/showthread.php?t=2403)

blamb 05-28-2007 05:15 PM

Venous Malformation support
 
MY son has a venous malformation on his face. I see a lot of info about other types of birthmarks but not much on VM. We see Dr. Waner, Faye and Berenstein. Anyone out there in the same boat? I would like to form a Venous Malformation Support group and create a website to assist others like us. Any info would be appreciated.
Betsy

semtechllc 06-03-2008 09:48 PM

Blamb, my son also has a vm slow flow on left cheek. Dr. burrows wants to do sclerotherapy. Did this work for you.

blamb 06-29-2008 01:20 PM

venous malformation
 
It improved his facial symetry to a degree. We are continuing fight the malformation with all the docs can offer. It has not gone away and I know it probably will not. But with every therapy he has done, there is a bit more improvement. Feel free to email me.
elamb1@carolina.rr.com

Margie Schaner 06-30-2008 10:38 PM

My daughter Camellia is 6 years old and has a large high flow AVM of the right mandible. We are going to Dr. Yakes for her 2nd treatment. I am hoping for a cure. I just registered to this site, so I haven't full figured out how to get around.

George Christou 02-07-2011 11:56 AM

Hi Margie, Its good to find you, my daughter Nicole ( Niki) whose 6 has just been diagnosed with a high flow facial AVM in the soft tissue on right side of her face and to some extent behind the eye, Tomorrow she is having an angiogram to see the flow and feeder vessels to see what the docs can do. Have been worried sick and as you do have been surfing the net to find the answer ! Which the more i lsearch to more i understand about what a complex issue AVMs are , like you( i also found your comments on Caringbridge), and have seen your beautiful daughter Camellias photos, I hope that her treatment with Dr Yakes at Swedish went well as we too may consider this option depending on what we are told by Docs in UK, Hope to hear from you soon
Take Care

George ( Nicoles Daddy X )

missy 02-07-2011 12:39 PM

Hi George!

Remember to come back and let us know how the appointment goes today and if you have any idea of a treatment plan!

Missy

jacqueea 06-02-2011 04:29 PM

Hello, my daughter has VM on her lower part of her body. She is schedule to have to treatments this month with Dr. Yakes in Denver CO. I would love to talk with anyone of you.
Hope to talk to you soon, Jacquee

Luna 06-21-2011 06:42 AM

Hi this is my first post here

I have Venous Malformation, in the lower side of my face, (mouth and throat)

I had sclerotherapy treatment in Boston, thanks to humanitarian organizations and hospital and staff mainly, for about 5 years

I came back to my country after it, Im 33 now and sometimes Im concerned about my health, like I have seen changes like the malformation is growing back

nickbar 06-21-2011 05:27 PM

Hello Luna,

I would highly recommend you contact your doctors in Boston right away and share your concerns. If you need any help getting into contact with them, please let me know. You can email me at the address below my name

Luna 06-21-2011 05:52 PM

Thank you for your response

I sent you an email with some concerns that I have

Quote:

Originally Posted by nickbar (Post 23581)
Hello Luna,

I would highly recommend you contact your doctors in Boston right away and share your concerns. If you need any help getting into contact with them, please let me know. You can email me at the address below my name



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