welcomes - bits more on legal / testing ect

[Guest guest]

> ,

>

> Great to see you join , Eurico, & Amy, in also becoming

a ceda

> member.

Wow - I know I'm in good company with all of you helping pave

the way for me as dual dx'ed . Thanks soo much Gail for shepard

ing me here .

I appreciated all the welcome posts too - Several of you wrote

offlist , and each was kind and welcoming :-)

I thought I'd add a bit to what you wrote below Gail - I think your

very right to be working on spreading the word here that ACM

may well have been missed by good neurologists

/neurosurgeons evaluations for many foks - in part because the

understanding of science and acm changed drastically in just

the last few years / and unless we who DO have it GET to true

specialists in acm , the diagnosis is often missed or blown off

as " insignifigant " .

I noticed the post here on Ceda's list about sleep apnea

impacts /stroke risks - and in one acm /sm study published a

couple years back -- 85% with acm had major sleep disturbance

found / most having either central or perifieral caused apnea .

>

> There are many people on the Chiari list (i.e. wacma...World

Arnold Chiari

> Malformation Association: See http://www.wacma.com/ ), that

have learnt

> about an association between Chiari 1 malformation & EDS

from the Drs. at

> the Chiari Institute (TCI) in NY; some of whom have found they

have EDS

> too/wonder if they have EDS.

IN a given year -- TCI currently see's around 450 acm /sm

patients if I recall the lecture figure right from last summer's

lecture . In just THIS year alone - since they started screening for

EDS in most patients seen -- over 100 have been found /and the

year isn't FINNISHED yet . They are currently finding an incidence

of about one in three folks screened who've got acm /sm .

It's QUITE clear now that there is an association in those with

acm /sm . What they are finding is - there are MIXED features of

more than one type of EDS - and they arn't at a point yet that they

are refering the folks identified to a specific doctor for testing to

confirm which type of EDS they actually have . They discussed

with me that since I live 3000 plus miles from TCI .

They felt it would be best to come home /and work through with

my local very good physicians if a more specific diagnosis

through an EDS specialist here would be needed to confirm or

rule out the vasular form since my health history does have

incident's /problems in the past that fit vascular form EDS - but

they've also NOT been the VERY distructive joint dislocations

and bleeding issues - they've mostly been on the more minor

bleeding end of the spectrum EXCEPT during pregnancy's

/delivery's ect like uterine rupture during full term delivery.

I'm in the midst of a new to the area /new grad rhemutologist

searching for whom he feels I should see for testing /typing now

- and havn't had skin biopsy confirmation of typing ect tried yet .

I AM hoping some here may have ideas /sugestions whom I

should consider seeing - I do have free flights available to me to

travel distances - and living in rural Northern CA expect I'll need

to go some distance . The rhemalogist felt surly someone in CA

is studing this - so felt heading to Seatle next may not be the

best option . He's doing research to try and find someone now - I

told him I'd do the same ( turning to you all - and a local chapter

of EDS members I THINK I've found info on - still got some work

to do to find if it's still around /active too ) . If anyone has further

sugestions( I did hear from one member about a connective

tissue clinic at Ceder's Sinai hospital in LA - thanks :-)

My full medical insurance coverage is good in CA only -- but I do

have Medicare coverage as well . ( I can handle copays to

medicare ONLY if the hospital or doctor is willing to accept VERY

small payments for consultations - and testing copay's ) = my

income is very limmited being on Soc Sec disablity /SSI .

Aso Gail wrote -

>

> also mentions the Amercian Syringomyelia Alliance

Project ( ASAP ).

> See: http://www.asap4sm.com/Index.cfm , & please look

around this site, if

> interested in finding out more about Chiari & syringomyelia,

which is often

> abbreviated to just " sm " as has written.

Sorry about that abbreviation use folks -- I can be slow to

remember that those abbreviations /AND " meds speak " I know

from my years nurse both can be gobblty goop to most folks .

When I do slip into medical lingo or use abbreviations you may

not know PLEASE ask me to restate /rephrase things - I'm glad

to try and do so -and I know it can make a big differance in

learning well /being empowered as a health consumer !

Anyone who does have an intrest in learning more about acm

/sm is welcome to write to ASAP above -and ask they send a free

new member welcome packet of info . It includes articles - and

info written at a general health consumer level that does help us

grasp the conditions better . They will gladly send a doctor's

packet of info to ANY physican at our request - keeping our

names out of the loup as requesting individuals if we'd like that

too .

It's more technical in article content ect - and does help inform

physicians on the changes in diagnostic standards ect that

evolved in the last few years - OFTEN this can make a big

differance in their knowledge basis since unless they went

through residency RECENTLY /and AT one of the few acm

specialist teaching hospital locations --they are APT to be out of

date /and miss the true signigance of how severe someone with

acm's problems may actually BE .

Gail wrote -

>

> Eurico has a great web site too...see:

> http://www3.sympatico.ca/ejfs/chiari0.html You know how

many of us had

> great difficulty in getting an EDS diagnosis; unfortunately the

same can be

> true with Chiari. Some of you with EDS might have wondered

about Chiari, but

> been reassured you, or a family member, doesn't have this.

Unfortunately,

> this all depends upon your Drs " understanding " of what

defines Chiari 1

> malformation. The text books define Chiari by so many mms.

of cerebellar

> tonsillar herniation, which many Drs. still adhere to. Eurico's

web site

> gives great info. on Chiari 0/borderline Chiari 1 malformation.

His web site

> shows links that you may show no cerebellar tonsillar

herniation i.e. Chiari

> 0, yet have Chiari. Well worth a look at.

I fully agree Gail -- Eurico has done a GREAT job of finding

articles - gathering up more recent research ect , and making

this available to others .

I've done some similar research / case law - and court rulings at

an appeals court level ect . that I'm glad to send to anyone

fighting insurance issues over exacerbation of preexisting acm

as well . All to often minor fender benders /whiplash causes

HUGE problems for those with acm - quite often sending a

previously asymtpomtic person OVER the edge physically to the

point of progression that may require surgery . I think the recent

association with EDS found may HELP EXPLAIN even better why

-- my 3d ct scans showed hugly enlarged ligaments between the

head and neck for example - that developed in response to too

much strain -- a very BAD whiplash /head blow accident about a

year before my surgery caused a VERY long slow recovery of

ANY signfigant neck mobility that I think may well be reflected in

seeing those ligagments grosly enlarged !

If any of you are currently caught in legal battles - I'd love any

articles /abstracts you know off that reflect this sort of injury to

someone with EDS - I'll add a seperate section to my " legal " file

for those who've got BOTH -- and be glad to share the file

ANYTIME .

I'll add too - that my attorney during my five year court battle over

my wreck / injuries / ect advised me NOT to post publically in this

sort of list about legal implications /aspects beyond seeking info

posts - instead he sugested " offlist " discussion /and using

phones when possible - since public posts can be draged into

court . If anyone want's my phone number please do write to ask

too - I'm glad to try and help with the legal issues /but will NEED

to get fuller up to speed on EDS - it's the acm /sm impacts I

know and have documented now .

I have had the help of a couple attorney's in reviewing the articles

/abstracts - and guidance on how to best use these resources in

legal battles - I'd welcome more too - if anyone here has EDS

experience in this area . MY aim was to help PUT together

resources others could use in the long run .

MY accident came during a phase of ACM research when most

" evidence " of harm was still theoretical ALTHOUGH my own

MRI's clearly documented 10 years of a stable degree of chiari

CAUSED by the accident to worsen in dramatic ways .

I was the FIRST case that NIH ( national instute for health ) acm

neurosurgeon specialists FOUND that showed that theortical

progression was REAL -- my and a few other cases found a bit

later HELPED PROVE this can happen . Dr Milhorat's acm 1

redefined article was the first study to include trama impacts

-and the court victory's happening now were a true turn around .

Those injured are winning settlements now .

What will help MORE now - is the knowledge that many of us DO

have EDS as well --it helps explain BETTER why we may

progress /and why the actual injury's are soo much worse than

they'd have thought someone will experience -- in short it's BIG

Progress in understanding what can happen and why --that I

think will FURTHER help anyone prove exacerbation

/progression too .

So -- again I'm soo impressed with your members kindness

here --and glad to be welcomed by so many of you too . I'm

EXCITED to find an opertunity to learn from all of you now .

Thanks again for those welcomes ( and steering me here too

Gail ) --

in Paradise

( EDS - type uncertian currently )

Chiari malformation ( partly decompressed )

Three lumbar /sacral repairs of bifida type problems

Multiple Sclerosis

Bits more currently being " worked on " include -

Probable bifida repair pending outcome /results of warm water

therapy in hopes it can be avoided :-)

Probable shunting pending since full chiari decompresion

CAN " T be well done given the EDS - (the plate used for full

decompresion to reshape the skull in those with a very shallow

posterior fossa shape will just shred dura further /causing

BIGGER problems when someone has EDS )- so shunting the

ventricle drainage is a better soution . Trial of Dimox now

starting to determine /confirm need for shunting - opening

presure with lumbar tap pending the diamox results .

IN ANYONE With possible chiari /confirmed chiari -- lumbar taps

need to be done by an acm specialist physician - OR

approached with a big list of precautions agreed on ahead of

time if done by non acm specialists .