Second opinion post-angio: no AVM

Thank you ALL for your comments earlier this week about the news that I do not have an AVM.

So the surgeon who did the angio told me that I have a "dilated" vessel and that i would live to be 100 before it ever gave me any complications. That I have no restrictions on my activities. When I asked him if it's possible this dilated vessel was causing my symptoms (dizziness, brain fog, fatigue, etc) he said that in his expertise, I was fine. That I could follow up with the neurologist who referred me and we could pursue that line of questioning.

So the next day, I get to work (I work at a University Hospital where I've been receiving all treatments so far) and read the radiology report and the surgeon's report. It's a freaking aneurysm (dissected aneurysm of the posterior cerebral artery)! And the picture is humongous! I mean, I'm no brain surgeon or anything, but I can see that the normal side is MUCH smaller than the "dilated" side.So I asked the director of my department for recommendations on how to follow up. She said she would put the word out to a couple places and get back to me.

In the meantime I emailed the neurologist to tell them what they found and asked her if she thinks it might be possible that the size of this aneurysm is pushing against the brain stem and causing my symptoms. Her response was "I don't know if this is causing your symptoms. Would you like to schedule a follow up with me?" WHAT? You can't answer my question, you won't RESEARCH it at all, and you give me YET ANOTHER canned answer and want me to make another appointment with you? Don't think so!

So I sent off my info to the Swedish Neuroscience Institute in Seattle asking them to look it over. I am convinced this is what is going wrong with me and I want someone to look at all the pieces and give me an informed answer. All I was getting was "you fall outside of the scope of my practice so I can't help you".

On Friday, my director got back to me saying that she talked to the director of neurosurgery and he told her to call the main surgeon's admin and drop his name to get an ASAP appt. But then he ran into that surgeon and talked it over with him and he told him to get me in that same day.

So I went in, met with him, and he reviewed the MRI and the angio and all my symptoms and confirmed what I already knew: I have a humongous dilated artery but that I also have a saccular aneurysm that is embedded in my brainstem with some surrounding swelling. And he wants to do a crani to tease out that sac and clip it, then apply a cotton sheath over the remaining artery to scar it to keep it from a possible rupture. He also stated that the location and type of aneurysm that I have is even more rare than having an AVM, that there are no real longitudinal case reports because they are so freaking rare. Bah!

So I just wanted to report back that I DID get a second opinion and that I'm happy with the results. And to thank everyone for all your support!

Oh, my gosh! Tell your other doctor, that you want a refund!

I'm happy for you that you finally got the right answer and they can fix it.. It's a good thing that you were persistant. Can I hire you? I'm still trying to find a good doctor. LOL

No, I havent tried googling it. I never gave it a thought. I’ll have to try that, thanks. I know some good surgens I can see. I just can’t find any neurologists who know about avms. The ones around here all took a stupid pill, when they got their degree. Ha Ha

Congratulations? I absolutely think doctors are so overworked these days that they really don’t think about what they say any more. Good thing we are here to keep them on their toes!! I’m glad you were able to find a 2nd opinion and good for you for being so stubborn!!

I am soooo happy that you kept pushing for an answer. As I have gotten older...I firmly believe you have to be pro-active when it comes to your own health. I have known several people who have ignored warning signs and just accepted a doctor's opinion that they were fine. Then later on they found out they had 4th stage cancer.

Good for you for being so stubborn!!!!!!!!

So happy to hear to where able to find out what was going on. Hope all goes well. Keep us posted. Will continue to keep u in are prayers. I agree with Ben i would ask for a refund !! LOL. I would defently talk to a pt. advocate about that other doctor thought there is something obviously wrong with him