Hi DD,
Your situation sounds a bit like mine. I had a 5mm herniation and my main symptoms were headaches at the base of the skull, dizziness, vertigo, brain fog, ringing & clicking in my ears, trouble focusing my eyes, etc. I was misdiagnosed with Meniere's disease & Vesitbular Migraines for 12 years (saw atleast 5-6 neurologists within in this time, including one from The Cleveland Clinc, and two from The University of Pittsburgh Medical Center). The number of other doctors I was sent to and tests that I had and the tons of medications they had me try would make your head spin (no pun intended). The word Chiari never even came up. I was clear on my MRI from the beginning, but not even mentioned on the radiology report. When after all of this time I did not lose my hearing (which happens with Meniere's), they said I couldn't possibly have that because I would be deaf by now. So my diagnosis was then Vestibular Migraines.
Meanwhile I quit my job, and basically became a hermit because my symptoms were running my life. I begged my PCP to help me find out what was wrong. She said "lets start from the beginning" and ordered another brain MRI. This time the radiologist report said "tonsillar decent noted, but not classified as Chiari I". I googled Chiari and nearly fell off my chair -- I had a ton of the symptoms listed. I brought that info to my PCP and asked her to order a Cine' flow MRI. She never even heard of it, but agreed with the information that I presented and sent me to a Neurosurgeon (NS). I then proceeded to see a total of 4 NS's. The first one, who is the listed here and other websites as the "Chiari" guy in Pittsburgh, didn't even look at my films or order a Cine' flow, but asked me if I wanted surgery? (I ran out of that office). The 2nd ordered the Cine' flow but said he only operates if there is CSF blockage. Lo and behold my results come back that I have "no flow posteriorly and very little anteriorly." When I went back to see him he said "you are not a surgical candidate" - this is not causing your symptoms. He said if I had a syrinx he would operate. Can't even describe the frustration level at this point. Went to NS #3 & #4 who both fully agreed that I had a definite Chiari & blockage. That was a year ago. I couldn't proceed then, I just wasn't ready and to be honest, there are no guarantees. Both doctors felt I would get relief of the major Chiari symptoms, but could not give percentages.
I am now 2 weeks post-op decompression, duraplasty & tonsillar shrinkage. I got to the point where I couldn't live like I was anymore, I needed to try this. I have literally tried every thing else and felt that I exhausted every other option. It has been a painful couple of weeks, and I do not know the outcome yet. My "chiari" headache is gone at present. I still have the other symptoms. I saw the surgeon for my follow-up and he said that the tonsils were plugging the foramen magnum and as soon as he shrunk them, the CSF started flowing as he hoped. As for what other symptom reduction I will get -- I am supposed to give it a year. We will see what symptoms were truly coming from the Chiari and which are migraine related.
Bottom line. You need to be your own advocate. Doctors do not want to diagnose this and are so quick to attach the symptoms to something else. You definitely should pursue every other option and get as many opinions as you can. Hopefully it will become more clear to you which direction you should go. Good luck :)
Debbie