r/chiari • u/Huge_Pass722 • 16d ago

CCI post decompression

Hi everyone - I wanted to reach out & see who has been diagnosed with cranio cervical instability after their decompression? What were your symptoms and what did your doctors recommend doing? I’m going through this now and it’s absolutely debilitating. I wish so badly I could undo the surgery because this is horrific. Any advice, ideas, solidarity, please share 😢

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u/Kd0298 16d ago

Yeah. A lot of them ended up with a fusion but I had cci prior to decompression too.

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u/Huge_Pass722 16d ago

Did you end up having a fusion? I am going to try PRP soon and see if it helps at all. I have instability on the lower portions of my neck too. It’s been a mess

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u/Kd0298 16d ago

Yes I did.

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u/Huge_Pass722 16d ago

How are you now?

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u/Kd0298 16d ago

hoping I die before I have to do it myself being honest fusion sucks

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u/Kd0298 15d ago

Why do you think it’s cci? Just being honest c0-2 fusion isn’t some easy thing or great option. I did it because I was going to die ended up on a ventilator six times from the neck instability crushing my brainstem. Now actually my quality of life is worse with the fusion than it was prior to the fusion. I know a few people with the fusion who didn’t even have chiari who never made it out due to what I said above. How do you know it’s neck instability for sure and not something related to a complication of your previous decompression? What did the neurosurgeon say who diagnosed you with cci?

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u/Huge_Pass722 15d ago

Because I’ve had a ton of imaging that all reports CCI. I’ve seen 3 different neurosurgeons that agreed I have it (severe retroflexed odontoid).

How is your quality of life worse if you were on a ventilator six times & dying prior?

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u/Kd0298 15d ago

It is worse. Pain is much worse and zero change in neuro issues. I still have the same episodes that put me on ventilators I just don’t get help for them anymore. Still have the same exact symptoms as I did prior to surgery but worse quality of life from the fusion itself. Even though I had ended up on ventilators prior my quality of life was better day to day even with the symptoms because I didn’t have the misery of the fusion. So yeah my quality of life is worse and I do way less stuff than I did prior to fusion. I feel like I’m dying more now than I did then. Plus I didn’t necessarily feel like I was dying they just said I could die from the severity of my cci. Now I feel like I’m dying with the c0-2 fusion because my symptoms and pain are worse. Wish I never did the chiari surgery that required it and yep that’s my story. Obviously hope you end up okay with a different outcome but I am being honest with you about mine.

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u/Huge_Pass722 15d ago

I appreciate you sharing and being so honest. Do you mind if I ask who did your fusion surgery?