Question-Vein of Galen Malformation - 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 > Additional Resources > General Resources

 
 
Thread Tools Display Modes
Prev Previous Post   Next Post Next
  #1  
Old 01-04-2007, 08:09 PM
Seanette Seanette is offline
Junior Member
 
Join Date: Aug 2003
Posts: 9
Question Question-Vein of Galen Malformation

Anyone diagnosed with Vein of Galen and if so what has been the prognosis? It seems each year we find out a new possible diganosis/problem for our 15 year old daughter, Alex. She recently had an MRI done for surgery with Dr. Berenstein on January 23rd. There's 2 new area of concerns, a blood anomaly in her throat and one in her brain. I asked Trevor (Dr. Berensteins PA) if we should be worried and he said not to worry but that there were these 2 areas that Dr. Berenstein was concerned with. Alex has had 36 surgeries for her vm's on the left side of her face, neck and mouth. She has several vascular anomalies in the brain. We know that they could potentially grow and we've been so blessed as she's only had phleboliths, pyogenic granuloma and boney masses grow (near the vm's). The vascular lesions themselves have been dormant. She did have a brain bleed prior to birth but was put on steroids for about 10-12 weeks. The vascular lesions shrunk but are still very large in her brain. I wish there was more information about vascular anomalies in the neck, throat, brain. Like what the future outcome is....Alex has 2 more surgeries scheduled for April 30th and May 1st. I'm feeling very overwhelmed (which is normal). I emailed the radiologist here on the VBF and typed word for word Alex's MRI. I hope he can email further information. Alex's case is so complex. We live 3 hours from a decent hospital and so I probably worry more than most. If anyone has any information for me, I'd greatly appreciate it. I researched on-line and most of what I've read regarding VGM and vascular lesions in the brain is not good.
Reply With Quote
 


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
Jacqui's Story - Life With a Lymphatic Malformation jacquismom Living with a birthmark - my story 4 06-19-2008 09:03 PM
Venous Malformation Question my4kids0044 AVM Help and Resources 1 06-27-2007 01:08 PM
question about venous malformation? Tamara Dawn AVM Help and Resources 3 07-16-2005 03:41 AM
LOOONG post, and a question about pregnancy christielee21 Youth and Teen Support 5 04-05-2004 03:10 AM
Multi-focal Venous Malformation Gayle AVM Help and Resources 9 11-11-2003 04:49 PM