To fuse or not to fuse

[Jill1218]

So here is the background. I am 29. I was diagnosed with type 1 chiari when I was 6. I had another decompression by Dr. Frim in 2010 but this really did not help. He only removed scar tissue. In April of 2015 I had a decompression with cauterization and a plate put in with Dr. Heffez at TCC. It feels like I traded symptoms. Recently I went to a new ns who looked at my MRI and said that I have a retroflexed odontoid, basilar invagination and odontoid pannus formation. He said he does not recommend a fusion 9/10 times but he said for me it was not a matter of if but when. This is pretty scary to me. He said I would need posterior and anterior, but he wouldn't do it and gave me several names to contact. How much loss of ROM should I expect? If I don't do it soon, what am I risking? I know this is degenerative. Would symptoms go away after fusion or am I jeopardizing my baseline by putting it off? Rather disheartened at this Chiari rollercoaster. Would really like to feel good one day. Any input is greatly appreciated!

[Kstavrid]

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.

[KerriC1]

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

[selmaS]

@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.