I’ve never participated in a support group before, but I’m going to try. I’m having a down day when I feel like my Chiari has ruined and robbed me of so much. I was first diagnosed in 2011, underwent my first decompression surgery in 2012, but that only made things worse due to the surgical technique used.
After that is a really long story about how I got turned away by everybody - and some didn’t do it nicely either (ahem - I’m looking at you, Mayo Clinic). I was seen as drug seeking or crazy. I FINALLY found a surgeon who recognized that I needed another surgery and was willing to do it.
So in late in 2014, I had a revision surgery. It stopped the ever worsening progression of symptoms, and also made some symptoms less severe or even go away pretty much completely, but either the nerve damage done between surgeries has left me permanently disabled, I’m still having compression, or both. In my second surgery one of my tonsils was resected, but the other one had two pretty large blood vessels connecting to the brainstem, so my surgeon left it alone. I trust his judgment on that - I’d rather this than being paralyzed or something - but I just can’t help but feel like the remaining tonsil is still causing problems.
It’s hard on me, my family doesn’t understand, I’ve been unable to work. Hell, I can’t even brown hamburger without causing myself increased pain because of the angle of looking down at the stove top. It seems my level of disability is atypical, but maybe that’s just doctors dismissing others as they did me. Are there other people out there who have become permanently disabled - unable to work, needing help with daily things, etc. - due to Chiari? If so, how on earth do you deal with it?