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I am sorry to say that I decided to sign off the CEDA list for the time

being. I have learned so much from all of you. Strength, perseverance,

asking for help--these come through so clearly on this list. But having

learned all that, I realize that only way I am going to complete my PhD

is by drastically reducing distractions. I know of one professor in my

field who was able to complete his PhD in 2 years (almost unheard of

time frame!), primarily, he said, because because he turned off his

email completely.

So cheers, all, and I will continue to pray for you.

Sincerely,

Lenore in Seattle

> I forgot to add to my posts regarding this --that congential or

> aquired cervical stenosis CAN cause much the same set of

> symtpoms as chiari can -- both forms of stenosis can narrow the

> csf passageways and cause CSF to back up with higher presure

> in the head too .

>

> It can be difficult to find a neurosurgeon who KNOWS those

> internal diameter " normal " measurements of each veratabra

> and has true expertise in sorting out congenital issues for

> example --again the chiari neurosurgeon guru's often seem the

> best choice to diagnosis this .

>

> Chiari itself that is congenital is OFTEN associated with a

> degree of congential spinal stenosis in the cervical vertabrae too

> -- there IS need to open the top vertabrae in some instances -but

> doing so below the level of c1 can pose integreity issues of

> stablity with cervical shifting occuring later -- with an EDS

> diagnosis I'd approach this with TRUE caution given the

> ligament /tendon issues with EDS and the dura integrity issues

> ect . -- AGAIN if this were suspected I " D head for the NY chiari

> instutue where the neurosurgeons know this conditon well too

> -and know /have some experience with EDS and issues of

> neurosurgery /dura grafting ect --it's NOT something to jump into

> surgery with lesser experienced neurosurgeons in MY opinion .

>

> Aquired stenosis can occur with trama - cervical disc's shifting

> ect and again that dura ingretiy would pose a special chaallnege

> in those with EDS .

>

> ONE diagnostic clue that the TCI neurosurgeons discovered too

> - is on 3d Ct scans in those with EDS the ligament's /tendons

> are often VERY enlarged taking up MORE room that normal --

> they develope in this larger way trying to  provide /compensate for

> the weakness in the tissue and provide stablity to the spinal

> collum ect . -- they are spoting this now -and able to SKIP part of

> the EDS diagnostic criteria ( still checking finger joints ect though

> ) and KNOW at that first glance seeing this enlargement that the

> person IS affected by EDS .

>

> Hmmm -- I'm SURE I'm forgetting some other bits Dr Bolognese

> explained in his discussion of the diagnosis for chiari /EDS

> jointly --I'll keep adding bits as the come back to my shaky

> memory's - LOL .

>

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

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