That was quick!

I called my PCP this morning and told her my concerns over the neurologist not treating someone with chiari before and how he blanketed all my symptoms. So she has already got all my info faxed over to the neurology clinic up at the university. I've researched this clinic last night online and they have done several chiari malformation studies and over 300 surgeries.

Again, I do not want the surgery right now. I want to try to manage my symptoms. BUT I do want Dr.'s who are familiar with this disorder, how to treat it, what test to run to look for important issues, and so-forth. I'm feeling so much relief just being sent up there. I will feel so much better that if at some point in the future an important decision needs to be made, that I will be in capable hands now.

My neurologist here in Kentucky was like that. He told me that I was looking for a one-stop cure, and that 5-6mm was nothing to worry about. I did my homework, empowered myself and found Dr. John Tew in Cincinnati. He decided to do a flow study with a CINE MRI. The results showed that even though I had a mild herniation, my canal was completely blocked by my tonsils. CSR couldn’t get in or out very well. Empower yourself, along with your doctor, to find the right place to go.

See, I really want the flow study done...just to be sure. The neurologist mentioned it but never went back to it or ordered the study. I want to be with people who know what they're doing when it comes to chiari. I got into the neurology clinic at the university of missouri hospital. My appt is next friday! :)

Thank you for sharing your story. It helps to confirm that I do need to empower myself and not just let some random Dr. decide for me what is best. Did you have any pain in your spine? I'm having pain, to the touch, in my lower spine area. I can't figure out why. Plus, I'm scared that my flow isn't good. Shouldn't they at least be sure of that, at the very least?

Really, the flow study did it for me. I remember that the radiologist put something on his report about my herniation being "nothing significant" but that it may be worth further study. I guess that's the way you cover your buttocks.

When I saw my neurosurgeon, who ordered the CINE MRI, he actually didn't look at it until after my exam. He did a neuro exam such as watch my finger - not pull, just watch :), walk toe to heel, etc. Almost everything I failed to some degree. Then, he told me that without knowing results, he'd said it'd be a wait and see based on his findings thus far. Finally, he then broke out the results to the CINE MRI, his eyebrows went up, and said I was almost completely blocked. By the time I made it to surgery, a month later, I was totally obstructed.

In a nutshell, when I went to this neurosurgeon, it was only for a consult to see if I had CM1 and/or anything else. It wasn't to push him into what I thought my diagnosis was. In fact, I told him what the local neuro told me about looking for a one-stop cure, and that he also said he was afraid that I was so emotional that I'd try to push a neurosurgeon into agreeing with me. I wanted him to know and wanted him to be defensive so that I didn't try to trap him into my way of thinking.

Empower yourself. Find an EXPERIENCED and SUCCESSFUL Chiari Neurosurgeon. The co-pay for a specialist isn't that significant - it's the same for a plain old neuro or ENT or anything ellse.

It never occured to me that they put things in the reports like that to cover their own butts. Interesting! There is no such thing as a one-stop cure for chiari, that Dr. was silly to even say that to you.

My neurologist I saw on Monday told me that Chiari is very common and rarely, if ever causes any problems at all. I knew when he said that, that I needed to find someone new, someone with experience.