New member

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Hi everyone,

I've been a member of the Chiari malformation group for ages (going on three

years

now) and thought I'd expand my range a bit. I live in the US. i've seen a lot

of doctors

over the past few years, some of which are certain I have EDS, some of which are

certain I do not. I have not had any genetic tests. I am hypermobile, bruise

easily,

and have heart valve regurgitation. I have annual echocardiograms that so far

have

not shown any changes, in fact the regurg has gotten significantly better over

the

past couple of years.

In 2001 I started having really bad problems with heart palpitations and rapid

heart

rate, dizziness, episodes of near passing out, headaches, problems breathing etc

etc.

That was when the chiari was discovered. I had decompression surgery in 2002,

and

although my breathing problems and heart racing improved somewhat, I still have

most of my old symptoms such as dizziness, headaches, lightheadedness,

confusion,

and fatigue.

So, I'm wondering now...is it possible that some of this is caused by EDS? I

haven't

found a doctor who seems to know much about EDS. Is EDS associated with

migraines? I feel like I've got a migraine nearly all the time.

I'm also wondering if i should have the biopsy test for vascular EDS. My aunt

died last

year of a ruptured cerebral aneurysm at age 55, but otherwise most everyone in

my

family is healthy. I had a normal pregnancy and delivery without complications

in

1999. Does anyone know if this test is accurate, and what it means if it comes

back

positive? I mean, are there varying degress of the vascular type?

Thanks and looking forward to getting to know you all better, Amy