I was reading on the web site for Dr. Henderson's that his office prefers that physician's complete the referrals for new patients. Is that always the case or should I go ahead and send in my MRI's and information on my own?
My neurologist wanted to start in state referrals first. He talked about sending referrals out of state if we were not satisfied with the in state neurosurgeon, but didn't seem to feel it was necessary to do it at this point. The neurosurgeon in state, I'm positive, will not be a Chiari specialist. It is in Mortantown, WV. I'm afraid if I go to my regular physician now and ask him to make the referral to Dr. Henderson after my neurologist is already making a referral to a neurosurgeon in state he is not going to be willing to do it.
Rebecca, you definitely need to be seen by a specialist, one that corrects CCI (your measurement looked great to me, and there’s no mistaking it!) why would we start in state first? Do they want you to have a bad surgical outcome with your brain and spinal cord before they will refer you out? Ask them both for the referral and get aggressive, there are only a few places in the country that do this surgery with a reasonable reputation. If they won’t refer you send your stuff to Henderson anyway- with a note on the front of your questionnaires that says you have a basilar invagination along with Chiari. In the meantime have an appointment in place with a geneticist or rheumatologist to diagnose you with EDS. His wait for an initial consultation is over a year. He wants to make sure he isn’t waisting time with a patient who doesn’t have Chiari or EDS- that’s why he wants the referral from another physician. I did not get a referral- I just sent in my images with a note that I had EDS and thought I had CCI.
The Chiari Institute in NY also fixes CCI, and so does one of Hendersons understudies at Georgetown University, I’m not sure of his name, F. Sandhu I think.
I’m glad you are headed in the right direction 
Jenn
Rebecca, can you print a pic of a Grabb Oakes measurement and show the NL? Or Whoever is referring you. Your NL said its normal cause he’s probably never heard of a basilar invagination or CCI. I understand about the crying too, so sorry. Hang in there. You are doing all the right things.
My regular doctor referred me to the local neurologist and then was as impatient as I was as well as unsatisfied so she wrote the referral (even though they work in the same practice together.) If you've already had the MRI's and other testing, make sure to get the actual images on a disk and try calling the places yourselves. A lot of them are not requiring a physician referral because insurance doesn't require it very often anymore. I see Dr. Prevedello at OSU in Columbus. He's been great and is very informed and not afraid to "take the bull by the horns." He said that it is more about the symptoms and quality of life that are being effected than the actual descent of tonsils and anatomical things. I have a 10mm, but I have fairly significant symptoms that have onset very quickly. He's a director of NS and specializes in minimally invasive treatment options. I had to see their NL first, but they referred me to the NS department and I met with him about a month later. I don't believe they required a referral either. :/ Best Wishes. XOXO