Hi Everyone, this past Tuesday (5/12/09) my 12 year old was diagnosed with AVM on the right side of her brain. I’m still in a state of shock. She’d been having headaches every day for 2 years but never really told us. She’d mention it hear and there but we assumed it was for all the regular reasons (not enough water, diet, hormones, reading in the dark, allergies…you name it). Initially we were told the mass was “very, very large” then we were told by the specialist that it was “on the smaller side and curable”. My state of mind is flipping between tremendous guilt for not catching it sooner and relief that we caught it before before it got any worse. We saw a specialist in NYC on Tuesday and we all liked him quite a bit (Dr. Alex Berenstein)…I’m hoping somebody on this sight has some info on him. I’ve heard he’s “the best” but we’re just trying to do our homework. I’m wondering if I’ll ever have another day without crying. (crying as I type this)
Hello!! I am Betsy, Ashton’s mom. He is now 4 and had a stroke at 6 months of age. He has 4 AVMs in his brainstem, cerebellum, and thalamus.
Hello,
My daughter,Camellia, has a right facial AVM. She is 7 and has been undergoing this discovery for over 2 years now. I would love to connect with you.
Margie
Hello Erica, My son Reid had an AVM bleed on his second day of life. He spent 42 days in the NICU that I had worked in for over 15 years. He is now almost 8 years old. He is a wise old soul. His tenacity has served him well and now he is doing typical 2nd grade boy stuff. Our journey has been bumpy, uncertain and at times down right scary- yet so full of joy and love it is unbelievable. Our experience has been so different from most AVMs (he was so young when it bled etc.) I am happy to share our journey or listen to your’s and Taryn’s. All the best, Christine
Erica (Taryn’s Mom) said:
I am a mother of a four month old child with an AVM on her left frontal lobe. Does anyone else have a newborn with an AVM?
My daughter Nicole was diagnosed with an AVM in the brainstem when she was 6 years old, that was her first bleed. Nicole is now 13 years old and has had 4 bleeds. When she was 8 years old she had Gamma Knife, but it did not work, she still has the AVM in the brainstem and this last bleed was sooooo scary because she lost consciousness and I had to call 911. Her Neurosurgeon says she can't have anymore Gamma Knife, it is inoperable and embalization is also not an option for her. I feel sooo fustrated and scared. I need to get a second opinion. Can someone recommend a neurosurgeon that specializes in AVM in the brainstem. Thank you.
Hi Barbara,
I have been researching and came across your post. How is your daughter doing? If you’re still looking for a neurosurgeon that specializes in brainstem AVMs, have you contacted Dr. Spetzler at Barrow? Hope she is doing well.
Hi I’m a parent of a 20 year old daughter with a large AVM below the knee…
Why are the doctors saying My daughter will not get out of coma because the bleeding happened in her brainstem ? I am happy to read this