Aa
Chiari advise help?
I have just been recently diagnosed with chiari malformation one...i know many of you are going through the same thing! Is surgery a last resort or is it pretty common once diagnosed? Does anyone know or can recommend me to a known good surgeon in southern California? Any advise would be greatly appreciated!!!
Do you know the size of your herniation?
It's hard to say about surgery. People react differently. Some people are aware of their Chiari for years or even decades before it gets to the point where surgery is necessary. Others never get to that point. And still others (like me) have surgery within a few days of diagnosis.
We have a thread here with doctors that we are comfortable with, check it out and see if anyone is close. Be forewarned, you may have to travel.
It's also important to be aware that there is no cure for Chiari. The operation can help with symptoms, but you will always have it.
You will need to be checked for related conditions - syringomyelia, tethered cord, EDS, hydrocephalus, etc.
Good luck and welcome to the boards.
It's hard to say about surgery. People react differently. Some people are aware of their Chiari for years or even decades before it gets to the point where surgery is necessary. Others never get to that point. And still others (like me) have surgery within a few days of diagnosis.
We have a thread here with doctors that we are comfortable with, check it out and see if anyone is close. Be forewarned, you may have to travel.
It's also important to be aware that there is no cure for Chiari. The operation can help with symptoms, but you will always have it.
You will need to be checked for related conditions - syringomyelia, tethered cord, EDS, hydrocephalus, etc.
Good luck and welcome to the boards.
COMMUNITY LEADER
HI Randy and welcome to the Chiari forum.
As Shane has mentioned, it is very dependant on if ur herniation is causing a CSF blockage.....Shane had a very large herniation and mine, by some drs was considered mild.....I recently had the surgery bcuz I had severe CSF blockage and compression.
U deff need to see a chiari specialist and be advised u may not find one in S. CA,
I know a member had suregery in CA by a Dr Won...and he is with Kaiser.....
That does not mean I am making a recommendation, it is just one u may want to research.
Testing to see what else is going on is very important too.
"selma"
As Shane has mentioned, it is very dependant on if ur herniation is causing a CSF blockage.....Shane had a very large herniation and mine, by some drs was considered mild.....I recently had the surgery bcuz I had severe CSF blockage and compression.
U deff need to see a chiari specialist and be advised u may not find one in S. CA,
I know a member had suregery in CA by a Dr Won...and he is with Kaiser.....
That does not mean I am making a recommendation, it is just one u may want to research.
Testing to see what else is going on is very important too.
"selma"
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