Chiari Information

[patdeb]

Our 13 year old son was just diagnosed with chiari malformation (7mm). Can someone recommend a chiari specialist in the new york area? He doesn't seem to have any symptoms, so I wonder how long before he needs surgery, if at all? Thank you all

[palmtrees5]

Hey, I'm just getting used to this whole idea as well....  Our son does know about everything....   [Actually, I tried to send you an e-mail (through this site).  See if you got it!    If you scroll over the user name, the box that pops up gives you an option to "send a message".....  That's what I did.  Let me know if it worked!]     For the first few days, I couldn't talk to any of my friends or family.  IT IS HARD!!  Now (a mere 9 days later) I find it really helps to talk about it....  I've been praying constantly!  It really is a comfort to know that others are praying for you too!  I will be praying for your family as well....

[patdeb]

Thank you selma, the information you supply here is invaluable! We will keep you posted on how things develop!

Sorry palmtrees5, I saw your answer after I sent my last reply. My son has a seizure at home, and because I have epilepsy we had some tests done, where they discovered the chiari malformation. We feel the exact same way you do! There is nothing wrong with him, not a single symptom! We are waiting for the meeting with the neurologist, but it's hard to control the emotions of thinking your son might/will need brain surgery. We haven'y even told our son yet or anyone else in the family until we get more specific information from the meeting and so that everyone else can enjoy Thanksgiving. We will keep you and everyone here posted, and our prayers are with you!

Pat and Deb

[palmtrees5]

Hi.  I too have a son (17) that was just diagnosed a week ago....  He doesn't have any symptoms either.  We are waiting to see a 2nd nuerosurgeon and get his opinion.  The first Dr. said he will most likely need surgery, but can probably wait until the end of the school year.  How was your son diagnosed?  It's not easy getting over the shock of hearing that your child may need brain surgery when from the outside, NOTHING seems wrong!!  Keep in touch!

[selmaS]

yes, The Chiari Institute...Dr. Paolo Bolognese......they have a web site...just google the name u will find the link.

keep us posted as to how ur son is doing and feel free to join us in our social activities here on the forum.

Godspeed
"selma"