New to group...seeking info./support

General
1

Hi, my son has recently been diagnosed with a cavernous malformation 19x14 mms in left temporal lobe. He's had 5-6 sudden and severe headaches/vomitting and nausea the last one came with uncontollable shakes. He's in Bellingham, WA north of Seattle, I'm in San Diego. I have a bizillion questions but I guess my biggest one is whether this is life-threatening, how soon should I get him seen by NS? Who's the best. He's 19 so he could probably go pediatric or Adult. I'd take him anywhere in the country. Have had two people recommend a NS in Seattle named Ojemann if anyone has hear of him.

Any advice would be much appreciated. It's not my first rodeo. My older son had Chiari I and basilar invagination. Surgeries in 2007/2008 to correct.

2

It’s pretty serious. Mine was definitely life-threatening when it bled. I would go in as soon as possible. Ask his doctors what plan of action they’d suggest.

3

It's not an AVM it's a CCM, I beleive they're different.

He's had an MRI and CT Scan.

We've had an NS in Iowa look at the film. He said the following: "It also appears that there has been previous hemorrhage because of hemosiderin present."

4

Ok. I don’t really know anything about those.