@jill1218- Hi and welcome to the Chiari forum,
May I start by asking where you are considering going and if EDS was rued out?
BI and a retroflexed odontoid may be why you still are having issues and only your Dr can say how much ROM you may loose.....I was told I would need a fusion but I was able to strengthen my neck muscles post op and my CCI is not as bad as it had been.....I do not have BI but did have a partially retroflexed odontiod...so my PFD helped me with that aspect...so far so good.....
I would think talking with a few Drs but BI is something that needs attention as it is pressing into your brainstem.....
Do look into this further as a true Chiari specialist could give you more detailed info on how this will impact you.
I had my decompression in Milwaukee in July of this year. I've had a few issues following, and now I'm wearing an aspen vista collar due to cranio cervical instability. I also feel like I traded symptoms. Not even sure which is causing which but I know I'm still in pain... I'm assuming fusion surgery is in my future also,
I don't have any advise to offer, just wanted you to know that you're not alone
I had a fusion due to BI (occipital to c2, posterior only), I also have Chiari. If at all possible, AVOID the fusion, I had it done and I am now trying to get it undone. The fusion is extremely uncomfortable and unnatural and I would try to avoid it, but I do know that BI is very serious and should be treated ASAP.