So... That NS sucked...

[Asaidi]

I went to Indy to meet with a neurosurgeon there. Long story short, he told me that the only symptoms he can verify are from the chiari are the headaches. Also, he said there is no such thing as a chiari 1.5 and that my chiari was too small to be doing anything major. Also, he told me I could still have MS and the trigeminal neuralgia could be from that. When I asked him for his recommendation as to what I should be doing he told me I should see a neurologist. And then he proceeded to try to scare me out of having surgery...

Now I have more questions than answers and I'm more terrified than ever.

[selmaS]

Was that NS a true Chiari specialist? I would think a specialist would be aware of 1.5...."The Chiari 1.5 malformation is defined as a tonsillar herniation within a Chiari I malformation with additional caudal descent of the brainstem ..." the above n quotes is from an article  from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2982921/
This is the National Institute of Health article......a government  agency.

[Asaidi]

Oh he knew about it. He just told me that it was not real. That was the moment I realized that he didn't know what he was talking about. I then tested him by asking what a chiari actually is. His response was that it was technically a skull malformation but really it was the herniation. I tried to go to the one in the recommended list, but they put me with this guy instead. I'm so frustrated that I drove so far and put myself through so much pain for nothing...

[selmaS]

I had a Dr tell me the same thing.....and a few that said the opposite.....it is not easy finding a Dr that is well informed and experienced to know how this can and does affect us and how to treat it properly.
Try and e-mail a specialist to see if they will do a skype chat with you....I know TCI in NY will.