Venous Malformation support - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > AVM Help > AVM Help and Resources

Reply
 
Thread Tools Display Modes
  #1  
Old 05-28-2007, 04:15 PM
blamb blamb is offline
Junior Member
 
Join Date: Mar 2006
Posts: 5
Default 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
Reply With Quote
  #2  
Old 06-03-2008, 08:48 PM
semtechllc semtechllc is offline
Junior Member
 
Join Date: Jun 2008
Posts: 1
Default

Blamb, my son also has a vm slow flow on left cheek. Dr. burrows wants to do sclerotherapy. Did this work for you.
Reply With Quote
  #3  
Old 06-29-2008, 12:20 PM
blamb blamb is offline
Junior Member
 
Join Date: Mar 2006
Posts: 5
Default 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
Reply With Quote
  #4  
Old 06-30-2008, 09:38 PM
Margie Schaner Margie Schaner is offline
Junior Member
 
Join Date: Jun 2008
Posts: 1
Default

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.
Reply With Quote
  #5  
Old 02-07-2011, 10:56 AM
George Christou George Christou is offline
Junior Member
 
Join Date: Feb 2011
Posts: 1
Default

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 )
Reply With Quote
  #6  
Old 02-07-2011, 11:39 AM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,716
Default

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
Reply With Quote
  #7  
Old 06-02-2011, 03:29 PM
jacqueea jacqueea is offline
Junior Member
 
Join Date: Jun 2011
Posts: 3
Default

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
Reply With Quote
  #8  
Old 06-21-2011, 05:42 AM
Luna Luna is offline
Junior Member
 
Join Date: Jun 2011
Posts: 2
Default

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
Reply With Quote
  #9  
Old 06-21-2011, 04:27 PM
nickbar nickbar is offline
Senior Member
 
Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,054
Default

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
__________________
Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
Reply With Quote
  #10  
Old 06-21-2011, 04:52 PM
Luna Luna is offline
Junior Member
 
Join Date: Jun 2011
Posts: 2
Default

Thank you for your response

I sent you an email with some concerns that I have

Quote:
Originally Posted by nickbar View Post
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
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
possible venous malformation in finger cjsmom AVM Help and Resources 14 05-27-2013 03:56 PM
Venous Malformation gina0291 AVM Help and Resources 14 09-30-2010 01:52 PM
New Diagnosis for my 3yr old- venous Malformation Maher2006 AVM Help and Resources 3 05-08-2009 06:47 PM
venous malformation of perineal area sissy Adults Living with Birthmarks 1 05-17-2006 11:14 PM
Multi-focal Venous Malformation Gayle AVM Help and Resources 9 11-11-2003 03:49 PM