So yesterday we took our 10.5 month old son to see the neurosurgeon for the first time. We were basically told that he did not know if chiari was the reason for his symptoms, but that they absolutely could be. I asked Iif his developental delays could be due to chiari, he said he didnt know…my son will be 11 months in 4 days and he still cant crawl and get stuck when trying to roll over (a problem he did not have before). Everything we askedwas answered with…I could be the chiari or Iit could be something else. He did say that he had the real deal, a moderate case of chiari with an 11mm herniation. We feel so defeated at this point and have waited1 month to be exactly where we were before… 
I can’t imagine how frustrated and upset you are. Unfortunately this happens to a lot of us- we usually hit at least one dead end before we get the right one to help. You’ve got to just keep going! Keep researching and looking for a Chiari surgeon for your little guy. I’m glad the NS didn’t tell you his symptoms are NOT from Chiari -I guess that’s a step up, but it still doesn’t help you! Have you checked the doctors list on this site? Are you able to travel for treatment?
Jenn
jcdemar...he is on that list once....I would be willing to travel. I'm pretty sure my lil man is sympotmatic..I just am so confused as to where to go from here. This appointment (that we waited a month and a half for) was supposed to give us a clearer picture of his condition...but we left there feeling more confused and defeated than when we went in!
How did the surgeon leave it…yes, no, maybe to surgery? Dr Ellenbogen in WA has a good reputation, and of course Dr Trumble in FL. I hate to steer you away from a surgeon in TX that might be great, but I just don’t know. If I left an appt feeling so unsure I would get another opinion.
He left it at lets wait a year and see what happens..Didn't suggest any follow up tests, and just really didn't seem to concerned about anyting.
Hmmmm. Wait a year for what…? What do you think? I say move on to another NS who can give you a little more than that. This process can be so defeating, but know your baby and you know if he’s not feeling good.
He said, the main complaint for chiari is headaches and how can you tell if a 10 month old is having headaches, they can't talk and I said well he rubs the back of his head and pulls his hair..I don't think that is a normal baby thing to do.. to which he responded...it could be or it could be something else. I have gotten the ball rolling on getting a second opinion..
Babies pull at their ears when they have ear infections. Him pulling at his hair and touching his tells me the same thing. Your a good mom.
Thanks it good to hear. Sometimes I feel like people think I'm crazy and that there is nothing wrong with my son but I know there is!!!