Newly diagnosed

I just found out today that I have AVM in the brainstem. I've had worsening dizziness and fatigue over the past 6 months, with the dizziness becoming much worse over the past 3 weeks. I'm to make an appointment with a neurosurgeon tomorrow, but in the meantime I'm kind of reeling. I had gastric bypass about 14 months ago and thought this was all symptoms of some vitamin or endocrinology problem. Glad to know that it's likely due to this AVM but also very scary in terms of treatment.

I will know more tomorrow when I can read the report from the MRI but apparently it's a small AVM but because of the location it's a grade 3.

Anyone here happen to be from the Portland, Oregon area?

Hi Jennifer,

Welcome to the support group. There are a lot of folks here that can listen to you and hopefully answer your questions.

As for any in Portland, there are five (all women ???). To find their names, go to the top of this page where it says MEMBERS and click. On the next page, click ADVANCED SEARCH. From there you can type in city/state to see the names of the five.

Due to the way this software works, you can’t send them an email until you have requested them as friends, and they respond to accept. If they see you post here, they can respond on this discussion.

From that search screen, or the search in the upper right corner, you can type in brainstem and see all the discussions that deal with that. That might provide you some more information.

Hope that your DR meetings go well and they can provide you some good options. From what I have previously heard, AVMs in the brainstem are some of the hardest to treat, since you have so much critical stuff there. Not saying there won’t be good options for you, but just a head’s up.

Let us know how your DR appts go please. Best wishes,
Ron, KS

Welcome to the group Jennifer. You came to the right place.

Yea, It is scarey at first. You can be glad they found it before it started to cause some other problems though. Ron is one of the masters of advice (don't tell him I said that. LOL.) I would follow what he said. He knows his way around here very well.

Please let us know what the doctors say.

What does grade 3 mean? Mine was never graded.

Too late Ben, I got the big head now (grin).

I'll be off the board for several weeks in Feb, so you all can recover from me. Someone has to do this: We're taking our saiboat to Lake Havasu, AZ for a convention/sailing week. Leaving frozen KS to go to mild AZ. YEAH!!!!!!!

Ron, KS

Ben Morrell said:

Welcome to the group Jennifer. You came to the right place.

Yea, It is scarey at first. You can be glad they found it before it started to cause some other problems though. Ron is one of the masters of advice (don't tell him I said that. LOL.) I would follow what he said. He knows his way around here very well.

Please let us know what the doctors say.

What does grade 3 mean? Mine was never graded.

Jennifer, Thanks for the link

Ron, You weren't suppose to see that yet. LOL / Can I come with you sailing? It's cold up here in PA, its only 3 degrres right now.

Know how u feel i was recently diagnose with my avm in december in dec. of 2010 and started having seizures. i have my angio on feb 3rd to find out what my treatment options are. And am also scared of what the treatment options are. Mine is located in my frontal lobe. good luck with yours, and all the best of luck on your journey!!