Hi Jessica, yes, as I understnd it you CAN have no substantial herniation or I think what they call chiari 0?? Or maybe it’s a zero herniation. The problem is you have a srynx, yes? Or did I misunderstand? I’m on my iPhone so I can’t even see what I’m
Writing because of the ben’s friends sign up thing… The symptoms, as I understand it, come from the decreased flow or increased pressure of your spinal fluid. The dura is the lining that surrounds your brain AND spinal cord which is like the stem of a flower.
A chiari herniation is basically when the back bottom of your brain, called the cerebellum, descends down into the spinal cord causing the flow to be decreased. Kind of like a cork too small for the bottle but stuck just the same. The wine will still flow, just not as fast and you might get some cork (ie: symptoms)that make drinking the wine not so fun… Not a great analogy but if you were here I could draw you a pretty good picture! 
I Highly highly suggest calling dr Souweidane. He actually fixes CI mistakes all the time. I heard this not from his staff but from another NS who I trust implicitly but doesn’t do chiari decompressions, he’s an aneurism surgeon… If you send me a private message here I can give you Souweidane’s number. His staff is amazing. Another supposedly good dr here in the city is McKhann at Columbia. If it were me, just my opinion, I’d steer clear of the chiari institute… Too many malpractice suits for my taste. Like crazy suits too. Just google dr bolognese malpractice chiari. Yikes!!! Good luck. Feel free to private message if you want contact info or anything else.
I want to thank everyone for all the response and information to this discussion. I never wanted to let Chiari take over my life ( even thought I had no choice) so I did not get involved with the groups and just lived with it. Over the years I have been on many Chiari sites I would read the reports and not talk with anyone because "nobody would understand anyway".
I am older now and hopefully wiser. Just hearing that other people have gone through the same things and really do understand and care does help.
My wife told me to do this years ago every time I would get down and frustrated....I always knew she was smarter than I am.
Again thank you all
I’ve had only one surgery with a duraplasty and as for me it has been a great blessing,I went. 27 yrs. inso much hell that I would tell anyone going through this surgery to find a chiari specialist to be on the safe side.The NSs here in my area could not diagnose me because they don’t know what to look for,they think the herniation has to be a certain size to be symptomatic,that is wrong,I am proof of that fact.I would have never been diagnosed by anyone other than some one who knows that there does’nt have to be a sizable herniation,my life was very altered and the only way out of my chiari was finding NS that can do the right tests and exam and would listen to me.My NS is one of the pioneers in this field but it was hard to make the discision to do the decommpression because of seeing a chiari that he called boarderline,but we moved forward,after seeing the grooves left by the cerebral tonsil on the brain stem with interruption of fluid flow it turned out to be the right thing to do.We as patients have to do our homework on our own,that’s what has saved my life,now I can live it.
Hi, My name is Tonia. I'm from Kentucky. I just wanted to ask you what was done during your first surgery. I had my first surgery 9 years ago and lately, I've started having some issues that make me wonder if it's scar tissue or if my symptoms are coming back. I'm working on seeing a neuro but in this state, I probably won't find one that specializes in Chiari.
Thanks,
Tonia
Oh Beeba, it's okay. I actually saved the list to my desktop so I would have quick access to it. As far as I know, bone was removed and he did something else. My mind has drawn a blank but I have my medical records. I have a 20 year old son who has had to undergo 2 of these surgeries as well. he was 6 when he had his first one and the second one was due to scar tissue. My neurosurgeon, who was absolutely amazing, now only handles pediatric cases.
Thank you for your help! It always helps to have others who understand!
Tonia