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Hello there Spirit75, unfortunately nobody here can diagnose you, give second opinions on imaging or tell you what you should do as we are not qualified. The information shared here is that of lay-people gained through personal experience. We all understand how frustrating and crazy uncertainty can be.
There may be doctors who would provide a second opinion on your imaging but surely this request would be best generated by your current medical team once they have gathered and considered the results of all your investigative tests? I know how impatient you feel but every stone needs to be picked up, looked under, the findings considered before any decision is reached especially as you have a number of co-existing conditions.
Please try to be patient, have your sleep study and cardiologist follow-up. Remember as well that your doctors will be ruling out any number of other causes of your symptoms before they reach a conclusion.
Hi, Spirit! I understand how this all can drive you crazy. I do.
It is pretty difficult to say if it is or isn't Chiari. Technically you can have the tonsilar herniation, but that doesn't mean you'll be symptomatic. Most people with the herniation are asymptomatic. There is confusion about the Chiari definition between physicians. When MRI's showed up, a small group of radiologists wanted to define Chiari, so they took 26 clearly symptomatic Chiari patients and 200 normal, healthy people and compared them. They came up with the 5mm rule. Now, 30 years later, we still don't have any better explanation for what is or isn't Chiari. This is why it's so hard to tell. This is also why you should trust a doctor over a chiari patient. We can't make the diagnosis. We can give you some advice and we'll try to help. If you watch this lecture, you may find some big answers to your worries. The dr also explains how easy it is to asociate a ton of problems with Chiari, but how few can be proved. He makes his point with a very interesting statistics example. It goes like this: the total revenue generated by skiing facilities and the number of people died by being tangled in their bedsheets is in perfect corelation. It doesn't mean they have something to do with each other.
I hope you find your answers and relief from your symptoms!
Best wishes,
Kristine