Looking to hear from people who have been diagnosed with multiple CAVMs. Specifically, I would like to know if all of your AVMs were discovered with an MRI, or if some were discovered using other imaging techniques.
I really appreciate any info, I am trying to gather information so I can decide the best course of action for my children.
Hi Christine. There is a CM sub-group on here…http://www.avmsurvivors.org/group/cavernousmalformationsupportnetwork
Patti G. started it. She has been dealing with her multiple CMs since 1987!
Sorry, I should have specified cerebral or brain AVMs.
Christine...I have had 3 CAVM's. They were only detected with cerebral angiography. They did not show up on CT scans or MRI's. If you are really concerned there may be an CAVM, I would have cerebral angiography. I was told it is the gold standard. Thank God, because of the angiogram, I was able to have mine treated with embos and a craniotomy.
Thank you Sue :)
That is what I'm looking for. Hopefully there are more survivors who can add their experiences so I have more ammunition with the doctors.
With all 5 of my children being HHT positive, I believe they should all have cerebral angios, and so far only 2 have, because they had one visible AVM on MRI, but both ended up having multiple AVMs, detected by the angio. They have so far refused to do an angio on the others, even with my CAVM history.