Hi everybody! I just thought I'd ask your opinion. I had my angiogram almost 2 weeks ago. the NS said I have a very strange looking DAVF. He said that he "doesn't think it's the dangerous kind" and asked me how bad it was bothering me. I assumed he was talking about how bad the whooshing in my ear was bothering me? Then he told me that he wanted to look at my picture some more and then consult with his colleagues about it and that he'd call me in a couple of days. Tomorrow it will be 2 weeks! I understand they are busy but I've got sooo many questions that I need answers to.
Mainly how many of my current symptoms are connected to the DAVF? I get dizzy spells w/ nausea - so bad I have blacked out (which I now wonder if that wasn't a seizure)? The migraines? But mostly can this be the cause of my memory loss and other neuro functions? I don't want to blame things on it if that's not it. But my memory is really a problem - causing me issues at work. I have a difficult typing (you have no idea how many words I've had to "fix" on this email. I use to be VERY accurate. If someone asks me my phone number either home or work I usually can't remember them without serious thought and I've mixed the number up (using part of each home & work) numerous times. I know you can have decline in these areas with age but mine seems REALLY bad for 51 years old and active. If my DAVF is "not the bad" kind as he put it, could it still be the cause of these issues???
Anyone have any input here? I would appreciate it. I'm a bit frustrated with not hearing from him and having a growing list of unanswered questions!
Jenny, Personally, if a HCP treated me the way you described you were treated, I would be VERY frustrated too & would either insist upon a response or seek another opinion.
Best wishes.
I was diagnosed with a large DAVF on the right side of my brain, in March 2012. I originally started with dizzy spells and falling down. I had the bad wooshing in my ear. I am 48 years old. I have a bit of an issue with short term memory. I have had two embolizations. Scheduled for gamma knife radiation at Mayo soon. Have you taken any birth control pills ??
Hi, Mavis. My DAVF is also on the right side. I've had dizzy spells and "fainting or passing out" periodically for several years. I took birth control pills way back in my early 20's briefly but my gyn doctor took me off of them fairly quickly when we realized that they caused my migraines to get extremely severe. He told me to never take them again as they would likely cause me to have a stroke. As for my posting above about being frustrated about not hearing from my doc for so long it was because he took my films and consulted with quite a number of his colleagues to get their opinions and come to find out my DAVF was the weirdest one ANY of them had ever seen. I'm having a large coil embo on July 31st. They will be going up both groins with 75/25% chance of success. If it does not work it will be a crainiotomy the next day.
I am furious on your behalf. It's "not the dangerous kind"? Compared to what? I am unfamiliar with this doctor, but when it comes to the brain and ultimately one's health, it seems that we have the right to demand the best treatment. If this has become that much of a pervasive issue, find someone who will make you a priority, even if it means traveling to a hospital that is not close by. I once had a doctor who made me feel that I was just another chart on a stack - it's not a great feeling. In my opinion, making a patient in your situation wait for two weeks for communication is unacceptable. You deserve better.