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.