Going to see an actual AVM doctor on Wednesday. Might now get some real answers instead of the " its stress" or " it might be epilepsy" answers. I dont even know how big my AVM is, I was never told.
i wish you the very best with your doctors appointment…hopefully now you will get some answers…thinking of you…be sure to let us know how you go xxx
Awesome John, that’s good news! I’m glad you found someone who will at least understand your diagnosis. Good luck with your appointment.
SO relieved to hear this John! I really hope you get some answers. At least you’ve taken back some control and are going forward towards better treatment which you totally deserve! Glad you got the appointment so fast too! Write down your questions! Let us know how it goes.
The first diagnosis my husband got for the spot on his brain, was calcium build up so the doctor call it a brain rock…did not trust this dr at all. So he went to regular dr and he got him in to see a neurologist and neurosurgeon that diagnosed avm but told him that it wouldn’t kill him. He still had alot of problems so the neurologist referred him to a dr in Nashville TN. We finally got in to see him. We was in the top 5 in the U.S. for 2007 & 2008 for AVMs. This dr finally explained so much more to us. He spent alot of time with us. He didnt want to operate until it bled again. He also wanted a cerebral angiogram to look at it. After the proceedure he came out and told us that he also had an avm behind his right eye. He called it a ccf type of avm. This one would show outward signs before it blows. He also told us that this one was more serious than the one on the left side. The stress is unbearable at this point. he has started seeing a counselor. It is helping. So do whatever you can to find some peace. I do know that it is hard. You are in my prayers…