Has anyone heard of this? My 15 y/o daughter had 2 hemorrhagic bleeds - one was a stroke. After several MRIs and 2 digital angiograms, we still have no conclusive diagnosis. All that is seen on the MRI now is scar tissue. Her neuro surgeon, who is extremely experienced in AVMs, is very confident this was an AVM that blew itself out. We need to watch the scar tissue every 3 months with an MRI to make sure there is not something underlying we can’t see that may grow - tumor perhaps. RIght now we are 6 months out from the first bleed; second one happened 6 weeks after the first one.
Wow, that’s a new phrase. Usually saying “Blew Out” when referring to AVM is bad bad bad news. Blew out as in gone away is great great great news.
I’m not discounting what your experienced neuro said, but I think I would ask the scans to be sent to another noted AVM team to see what they say is going on. The wizards that do this stuff would be interested in unique cases, so shouldn’t be an issue to find a well known team to look at the scans. And it might be that they also can’t find a conclusive diagnosis.
Our Drs locally were good, but when we went to Stanford, they found an aneurysm that no one else saw on the previous scans. Of course, it is possible that the aneurysm just showed up after an embolization also…
Curious to hear how this progresses. Best wishes,
Ron, KS
Hi Ron,
You and I are on the same wave length; All of Julia’s films (up until this last MRI a week ago) have been looked at by a team at Emory Hospital/The Marcus Stroke Center at Grady in ATL. I am bringing them the latest film today or tomorrow. That team was leaning toward AVM as well. I’ll let you know what they say when I hear back.
Never hurts to get another opinion. The doctors at Emory know and understand AVMs.
The interesting thing is that my daughter’s CHOA’s neuro surgeons are also on staff at Emory. Julia’s main doctor is the most experienced in AVMs/Gamma Knife at CHOA. This other team strictly works with stroke victims through Marcus Stroke Center. I am so anxious to get their opinions!
Dr. Barrow saved my life 23years ago! I hope your daughter is improving!