Does any of have an AVM without a nidus (the center of an AVM that is usually embolized)? Or heard of it? If so, what are the treatment options for it? My almosst 3 yead old son's nidus didn't show up on the MRI and I am reluctant to do a Arteriogram to find one unless we choose the embolism at the same time.
sorry, I think I inadvertently sent a message to ALL of you as well! ;) I am a first timer, coming out of my lurking stage.
Hi! Saw your post about missing nidus; I currently have AVM in my head/face and te doctors could not find the nidus in spite of seveal angios and embolizations. This was a couple of years back when they did these procedures. I am much older than your son and 40 years ago had major surgery/ resections when I was a teenager 40 years ago. Unfortunately my AVM regenerated much larger than ever before and like I said when they conducted the tests were unable to identify the nidus. They also told me that even if they could find it, that it would probably be inaccessible due to the risks involved. However, please again know that I had an extensive rescetion when I was young so am not the typical case as nowadays they do not recommend a rescetion until they have isolated the AVM through embolization or similar procedures. Obviously without finding the nidus it is virtually impossible to stop or stunt the growth; however, maybe your son's nidus is simply very small right now, I am sure it is there somewhere and no doubt they will find it! They are doing some amazing things nowadays to treat these conditions. I will keep you and your son in my prayers! v/r Steve
Thank you, Steve for sharing your information. What you share is invaluable to us that are just beginning this journey. I can not imagine the road you were on where almost everything was unknown about AVMs. By sharing our information there is hope in the future for curing this nasty thing. I have learned that sometimes the nidus is diffused and not always localized, therefore harder to treat. I have came across your story in my lurking stage and you have been in my thought and prayers, and will continue to be. Thanks again! for taking the time to reply.