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Re: How many Chiari II's?

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In a message dated 12/15/99 5:55:07 PM Central Standard Time,

notyou@... writes:

<< I was wondering if you could all tell me how many of you have Chiari II,

and have had the Surgery? And please, those of you who have not had the

Surgery, please feel free to reply, I would like to know that too. >>

has Spina Bifida, Hydrocephalus w/VP Shunt, Tethered Cord,

Syringomyelia w/syrinx @ c1- c2, and ACM II. He has had a decompression on

March 2, 1999 and is doing great. He should have actually had the surgery

when he was a year old...it would have saved him a lot of unnecessary

suffering.

We owe that to a narrowminded, egotistical Neurosurgeon who kept insisting

that the chiari was asymptomatic and all his problems were from the spina

bifida....NOT!!!

Love, hugs and prayers, Haydee (Nana to , 7 1/2 yrs old w/Spina

Bifida, ACM II, Hydrocephalus w/VP Shunt, Syringomyelia w/Syrinx at c1-c2, G

Tube fed (totally NPO), Swallowing Coordination Disorder, Neurogenic Bladder,

ARDS (Lung Failure) 3/30/97, 33 days on ECMO (total Lung Bypass), 60 days on

Life Support, Humidified Oxygen Dependent, Radical Tracheostomy w/Total Loss

of Vocal Cord Use, Paralyzed from the Waist Down, 18 Surgeries, Asthma,

Severe Latex Allergy, Allergies to many Medications Adhesives and tons of

other stuff, With Such a Wonderful Love of Life and one crazzzy Nana living

right outside Baton Rouge, Louisiana. Posterior Fossa Decompression, Opening

of the Dura (No graft) and Laminectomy of c1-c2, March 2, 1999...w/immediate

and dramatic improvement of symptoms, so far so good, getting better and

stronger every day!!!)

's web page ~~~> <A HREF= " http://www.pressenter.com/~chip/joshua.htm " >Th

e Story</A>

http://www.pressenter.com/~chip/joshua.htm

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In a message dated 12/15/99 6:55:31 PM Eastern Standard Time,

notyou@... writes:

> I was wondering if you could all tell me how

> many of you have Chiari II, and have had

> the Surgery?

has Chairi II with no spina bifida, hydrocephalus and severe

craniofacial abnormalities.

She has been decompressed and then had the dura opened and still is having

many problems.

Tory ('s mom)

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Hi Brande,

Haydn has Chiari 2 and has been decompressed twice.He was very

symptomatic both times.Main symptoms were swallowing

problems,apnoeas,GERD and short term memory loss.

Interesting though he does not and has never suffered head or neck pain

as a result of Chiari.

Trish in New Zealand

Brande wrote:

>

> Hi,

I was wondering if you could all tell me how

many of you have Chiari II, and have had

the Surgery? And please, those of you who

have not had the Surgery, please feel free

to reply, I would like to know that too.

For starters.......I have Chiari II, and have

not had the Surgery, as of yet, that is.

Take Care,

Brande

NotYou@...

Take Care,

Brande

NotYou@...

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