Hi, I don't know if anyone can relate to this but I had a pulmonary AVM coiled (3 times and superglue) 7 years ago. I have been followed since then by bi-annual transcranial dopplar bubble studies. Recently, I found that my TCD came back positive again (3.5 out of 5 - it was a 4 before). They have done extensive testing after I had 2 neurological events (loss of speech and L sided weakness). The tests have included MRI, CT scan of the chest, numerous heart studies, blood clotting studies and all tests have come back negative.
I saw the Dr this AM and the conclusion is that I probably have some shunting in my lung but he said they can look (probably with angiogram) and never find them since they didn't show up on the CT. I'm not sure I understand the difference between shunting and an AVM. I am pretty disconcerted with the fact that nobody has any answers or knows what to do with me. Help!
ps...I have had severe migraines since this all started
Hi, Monica, I think shunting would mean that your AVM may have revascularized around the glue and coils. You have a tricky situation, and I think you will want to gather as many opinions as possible to help you determine your next move. I'm sending you a friend request -- if you friend me, I can send you a message with the names of some other PAVM members, so you can ask them about doctors and hopefully find one who can be more helpful.
Here are a couple of articles about migraines and PAVM that may be helpful to you:
http://www.ncbi.nlm.nih.gov/pubmed/19324948
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2672138/
Dancermom, thank you so much for all this information. I cannot tell you how much I appreciate it!