Newly diagnosed AVM in Seattle area with lots of question

I am newly diagnosed with a brain AVM and new to this site. I’m hoping someone here may be able to give me advice on the best local Neuro. I’m scheduled to see one in Tacoma on 1/28/14, but apparently you only get to see a P.A. on the first visit. I’m wondering if that’s normal? Overall, I’m just really afraid of what will happen next and desperate to figure out what is going on. My biggest fear is that the Neuro PA will blow me off like the ER doctor did. Any advice on what questions to ask and how to advocate for myself would be greatly appreciated. I’m 37 years old with no blood pressure issues and over all healthy. I don’t have a strong support system, so I’m pretty much on my own - very happy to have found this site.

My Story…
I went to an urgent care on 12/12/13 after a 2 day headache that was not going away with OTC medications. They found the bleed deep below my left temporal lobe on a CT scan and sent me to St. Joe’s hospital where I had a second CT with contrast. I was observed overnight and sent home the following afternoon.

The hospital experience was really bad and I was given very little information. The only time I actually saw the ER doctor was during admitting and for about 5 minutes just before I was discharged. There was one nurse that came in early the next morning with a packet of information about a hemorrhagic stroke. It was the first time anyone even mentioned the word stroke or AVM which completely freaked me out. When the ER doctor finally came in he asked me if i would rather stay another day to have an angiogram or offered to send me home with a referral to follow up with a neuro in 6 weeks for the angiogram. I told him I would prefer to have the test done that day as I was scared and desperate for information. He left the room for a few minutes, came back and said he would have to send me home without the test because I needed to wait 6 weeks for the blood to disappate around the site of the bleed before they could get a clear view of the AVM on an angiogram. The hospital was very overcrowded at the time. I was kept in the ER during my entire 36 hour stay and changed rooms five times. I couldnt figure out if he was being completely honest or just trying to free up a bed. I left with a lot of unanswered questions.

Since being discharged on 12/13/13, I’ve had headaches, some tinnitus in my left ear and a feeling of being just a little “cloudy” in my head. I’ve also had a couple episodes of excruciating back/chest pain, which I was told was due to the blood from the brain bleed traveling down my spinal column.

Take someone with you to the appointment. 2 sets of ears are better than one. You may wish to review this list…
Try and get a second opinion or even a third!
Best of luck!

Click on members at the top of this page and do advanced search. You can find other members located in the Seattle-Tacoma area. Then click on their profiles to see which doctors they liked.

Are you able to get to Seattle? I’ve worked with Dr. David Newell at Swedish (Cherry Hill) hospital and Dr. Louis Kim at Harborview. They are both vascular neurosurgeons who do research on AVMs. Both are really good. Best of luck with this! The first ER I went to missed the bleed and basically blew me off and sent me home twice. I was later told that because of the location nobody would have done more than observe unless the bleed was catastrophic so no harm done but it did not give me great faith in that hospital ER.