Re: - Chiari and welcome!/, Jill & all

[Guest guest]

Hi ,

And welcome to the ceda list from me too.

Jill, & I have " met " before as we're both on other lists about

Chiari malformations, & 's neurosurgeon is the one that is writing

with his colleagues about the association between EDS & Chiari, &

has been part of that study, so will know more than me.

I was just so pleased when Dr. Bolognese told me there was an association

between both these disorders which affect our family, as this was something

I'd been looking into for several years, as you know, Jill. The hard bit is

in trying to raise awareness of this association with Chiari, in some of

those with EDS, before Drs. M & B et als paper is published; at least that's

the case here with our Drs. in the UK.

Despite Dr. B telling me my symptoms are common in Chiari 1, our UK Drs

don't want to know, partly due to losing our youngest daughter, who had a

tracheotomy rather than posterior fossa decompression done, as they hadn't

looked into Chiari (which it's now thought she had according to Dr B., &

others, as well as EDS), & partly due to their out-of-date concept of

Chiari. You know, , " if you haven't got cerebellar tonsillar

herniation, you haven't got Chiari 1. "

I do hope Dr. B finds out more for you , as you know there probably

isn't anyone better to see as he understands both Chiari & EDS. I'm sure

you'll find lots of help here about EDS too in this ceda-family, & certainly

support; it's a great place to be!!

Now how about working on Dr B to join here too?

Best wishes,

Gail

North Yorkshire, UK

HEDS

Eldest daughter: HEDS

Son: " Marfanoid " HEDS, Chiari & syringomyelia