/Re: Dr F study /guidance sought -

[Guest guest]

Hi , I've been mostly off the PC for a couple days and way behind on

emails. Has your question been answered? Is there a contact name or email you

need? Contact me direct if you need some help with this OK?

c-clark05@....

Cindylouwho

Dr F study clarification /guidance sought -

Can you also offer any insight to my inquiry /no response yet

situation explained below ?--

> I had been in touch with Dr. Francomano through much of the

time that she was

> trying toget it up and running.

( sniped here )

> When she got the go ahead, she did contact me again. I know

that lots of

> folks are contacting themm though. I'm not sure that they have

hired the program

> coordinator person yet to field all the inquiries and set things

up. Until they

> do, one of the fellows working with Clair is handling that for the

study.

>

> My advice is to go ahead and contact them. They are rather

swamped so it

> could be a long wait otherwise. It's the squeaky wheel principle

i think.

-- I wrote to her inquiring about the study about a week

ago after getting the sugestion from someone here .

It appeared to " go through " -- no deamon notice ect . == but no

response yet either ??

I'm not sure how long to wait before assuming that I may need to

BE a squeaky wheel and try again ?

I can understand being very busy -- no study coordinator yet ect .

-- I'm newly diagnosed with EDS - but have chiari as well -- and

have had 4 prior neurosurgery's ( spinal bifida /chiari ) --now

facing two more proabable neurosurgry's surge in the fairly near

future and extensive oral surgery as well -- my local doctor feels

I NEED to find out just what type of EDS it is I have -and get better

recomendations on how these surgerys can best be carried out

ect - Hense my writting to inquire about her study.

I'd appreciate any insight you folks might be able to offer in

gaining her attention /consideration for the study -- I feel like a

fish floundering here - LOL . The rhematologist I saw for the first

time was GLAD I'd found a lead on whom to consult with -- he's

new to EDS as well -- alas -- no response yet - LOL . Should I be

seeking somone ELSE to consult with now ? ( I'm in CA - but got

no response to an inquiry here who might be good to see

EXCEPT the sugetion to apply to her study ) .

Thanks for any insight -- my reality is I can't daudle too long

before at least the first of these surgerys too -- and I do have a

history medically that leans toward type 4 from what I and my

local doctor can piece together .

in Paradise ( new here -- vetern acm retired neuropsych

nurse /chiari suport advocate )

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca