Re: Does this sound like Chiari symptoms?
I am in the northeast, in Albany NY,so I don't have much to offer regarding specialists in the midwest, though I have read on other sites about Dr. Oro who is in Colorado...there is a Chiari Institue in New York as well. Many people find that they end up having to travel for the surgery and some are able to work with their insurance providers to get out of network coverage. I was lucky to find a specialist in my city who took my insurance, that's pretty rare from what I have seen. So if it boils down to a NS who isn't an expert versus going out of town and dealing with some potential hassle, I would say take the second option.
One of the things I really liked about my surgeon is that he took a conservative approach and did not decide ahead of time about doing a duraplasty. For some people it's truly necessary, but he was willing to wait to see what happened when he removed the bone and ligament tissue. What ended up happening is that my dura "outpouched" so dramatically as soon as he removed the ligament that there was no need to cut and patch the dura. There is some possibility of cranial settling in the future, but the complication rate is lower without duraplasty and my recovery was pretty swift. Everyone is different of course, and the fact that I did not have a syrinx or tethered cord made my surgery pretty straightforward. I was released after 2 nights in the hospital with 16 staples in my head and neck. They came out after about 3 weeks and I was able to return to work after four weeks.
I tell you all of this because Chiari is one of those diagnoses that can be pretty frightening, but can be successfully treated. There is no true cure, as I said I may have issues in the future with cranial settling, but for me, I would say the surgery was an absolute success. One symptom that you mention, neck pain, is one I had for years and didn't even realize it was Chiari related until after the surgery, because it went away!
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