Re: spinal fluid leaks / One more bit too

[Guest guest]

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 .

[Guest guest]

,

After reading both of your posts, I've decided that I probably need

to read the articles, the emails you've sent to me privately, and

then schedule an appointment with my primary physician to discuss all

of this with him. I'm SURE he's not aware of any of this! I'm glad

I finally got up enough nerve to ask about the connections with

Chiari, Spinal Stenosis, EDS and prior brain surgeries. My husband

is probably going to go haywire when I have him read all of this!

I may have more questions as I proceed, but I want you to know how

very helpful this is and to thank you once again, for being so very

helpful to me...and to others. I do know there is another person

that was wondering about all of this like I was, and will be very

interested in reading your answers to me. Especially the part

regarding Cervical Spinal Stenosis.

You're a real GEM! Thanks , I'll be in touch!

Love Lana

> 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 .

>

>