I went to TCI in NY and had Dr Salvatore Insinga....
Hi and welcome to the Chiari forum.
There are still members that post here is that what you are asking?
Hi and welcome to the Chiari forum.
Crystal has not posted since Nov....not sure if she is still following the site, but u can always PM her that will generate a email that someone is trying to contact her.
As for EDS it is related to Chiari many of us with Chiari also have EDS...not all but many.
It can play a role in adding more pains that just Chiari alone may not...and it can affect how u feel and heal with surgery as we tend to heal slower, and can have adverse reactions to meds and foreign materials...so ur Dr will need to know and offer to make the necessary changes to help avoid issues.
You mentioned other health issues that were diagnosed in NY. Was the EDS Ehlers-Danlos? I have that condition as well. If you have this, can you tell me if that played a part in the severity of your Chiari Malformation?
Thanks,
Angie B
Hi! I live in Charlotte too! I went to Duke to have decompression....not good idea. So parents like Dr. Grant there though. I went to the chiari institute of ny and found out I had EDS, TCS, IH, CCI!
A few of us Chiarians have been meeting at Julia's cafe on wendover rd at 130-4 every 2nd Thursday and Saturday of each month. Come join us.
My deff is a NS that has his whole practice focused on chiari and related conditions.The problem in my mind with w NS that has done alot of chiari surgeries...how do u determine a lot...does that dr keep up with new techniques and over how long a period is he counting his "a lot" of surgeries.....can he handle a "surprise" if it should arise?
This is how I viewed it when I was searching for a dr for myself.
The biggest and most important u have to have faith in ur dr and feel comfortable with him/her.
"selma"
Thanks so much for your help. I found the list on the Health Pages.
I was wondering, how would you define a "Chiari Specialist"? Is it someone who only deals with Chiari, or just a neurosurgeon who has worked with a lot of Chiari cases?
Thanks again,
Kirstin
Hi and welcome to the Chiari forum.
The had been a very good chiari specialist in NC.....but is no longer available.
U may need to travel a bit to get to a true chiari specialist or deal with a NS with less experience.....which is not to ur advantage.
We do have a list of drs for u to research here on the forum as well as in the Health Pages.
If u need help navigating please let us know.
I am glad to have u join us here to our chiari family...but sorry for the reason u had to seek us out.
"selma"