Chari malformation 1

[Dee619]

Hello,

I was diagnosed chair malformation type 1  9 months ago. I have been seeing neurologist since then and referred to neurosurgeon…could anyone know in San Diego who specializing in chair please.

Thanks,
Dee619

[selmaS]

Hi Dee...did u get my PM with the list of drs?...if so, please research each to find one that is a chiari specilaist and one u like.

Most of us with chiari need to travel to get to an expert.I can not reccommend neone....but Dr Oro in CO....is a very well known chiari specialist and I had the pleasure of meeting him.

The only other drs in the field are either in PA or NYC that I have personal knowledge of....one on the list I gave u is a dr of one of our members.

U do need to know there is no cure for chiari...only treatment.If u look at the Zipperhead thread u will find members that have had the surgery and ask them questions.

Were u dx'd with puseduotumor cerebri?or another name is intercranial hypertenseion?

Have u had LP's....or was a shunt suggested?

"selma"

[Dee619]

Hello Selams and thanks for having me.  I do not know where to begin as far as my symptoms; I’ve neck pain head ache dizziness feeling tired all the times. I’m a single mother of one child who is 8 who needs my attention all the time. I’m so frustrated and do not know what to do...I was on Diamox r since June 2008 to reduce the amount of fluid on my brain, but it seems doesn’t help then he putted me on topamax.  I didn’t see any help on this med either.  Please  I need help ..I’m very frustrated and don’t know what to do.
Thanks,
Dee

[selmaS]

Hi Dee and welcome...sorry u had to look us up, but I know u will find this a great place for info and support.

We had a chiari specialist thread that has drs listed....please research all drs to insure u r comfortable with him/her and that u have a chiari specialist.

I will PM a list that I have sent to other's in CA.


I hope u continue to post  here so we can get to know u better.

Godspeed
"selma"