Replies to This Discussion

Permalink Reply by Aimee Bankston on June 4, 2010 at 7:49pm

My daughter, Samantha, was 10 months old when we found out she had an AVM. Her AVM was 4.5x4.5cm and had been bleeding for three weeks before they found it. She had it removed the day after it was found and is doing great. I'm happy to hear that your Samantha is doing so great too. We are miracle babies.

Permalink Reply by Betsy on June 10, 2010 at 11:02am

My son was 6 months old when he had a bleed. He has 4-5 unoperable AVMs deep within the brain. He too has other issues such as seizures and an enlarged heart. He is now 5 and a half and a great blessing. Enjoy everyday with her.

Permalink Reply by Chloes mommy (Samantha) on June 12, 2010 at 10:01pm

Chloe has never had a 'bleed' before. I read a lot of stories about them though. Most people say that is how theirs (or their children) were found. Chloe is an amazing blessing and she us told every day! She just celebrated her 1st bday on June 3! <3 her so much and I would do anything for her!

Permalink Reply by Claires Mom (Leisa Lundy) on July 6, 2010 at 2:45pm

My daughter was 2 weeks old when she was diagnosed w/ a vein of galen AVM as well. It too caused congestive heart failure and hydrocephalus. We were told there are only five surgeons in the world that operate on infants we were fourtinate to be an hour away from Seattle where Dr Ghodke works and teaches. Would love to chat more about our little ones, their stories sound so similar.

Permalink Reply by Chloes mommy (Samantha) on July 6, 2010 at 9:25pm

Lisa, I would love to chat with you. We too are very fortunate to live fairly close (2 hrs) from one of those surgeons. Chloe is now a year old and has recently (2 months ago) had a VP shunt placed and is doing AMAZING!! Hope all is well with you and your little one. I look forward to talking to you!!

Permalink Reply by Claires Mom (Leisa Lundy) on July 7, 2010 at 11:06am

Claire had her vp shunt placed in October when she was 2 months old. She is doing pretty well, having some eyesight issues though. Her opthomologist mentioned to us that blindnes sis commom w/ avms in the vein of galen, have you heard anything similar to that or experrienced problems with Chloes sight?

Permalink Reply by Suzi Santamaria-Kono on July 8, 2010 at 3:57am

My baby Mina just turned 2. She had an embolization after her 1st birthday. I am glad to hear that Chloe is doing well.

Permalink Reply by Chloes mommy (Samantha) on July 19, 2010 at 9:35pm

we were also told the vein of Galen avm could affect vision/hearing at any time. Chloe is currently in glasses because she is extremely farsighted. She's been in glasses since She was 6 months old. We were told we are lucky she's not blind. Right after she had her shunt placed her eyes were HORRIBLE (even in her glasses). It took several weeks for them to get back to normal.
How is everything else going?

Permalink Reply by Chloes mommy (Samantha) on July 19, 2010 at 9:36pm

Thank you! How is your little one?

Suzi Santamaria-Kono said:

My baby Mina just turned 2. She had an embolization after her 1st birthday. I am glad to hear that Chloe is doing well.