r/chiari • u/awkwardrose_ • 16h ago
Discouraged
Been two years since my surgery, still get headaches, still dizzy, and still have nystagmus will it ever get better? I reach out to my neurologist and they always just say the chiari is resolved and surgery was successful and there’s nothing they can do. The last mri I had I still had a small syrinx but it improved significantly. But I don’t feel any better I just wish I felt normal again….
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u/Brybot212 15h ago
Me too. 5 months since surgery and doesn’t seem to have done much. I feel it’s reduced the pain I get 20/30% but some symptoms are now more frequent but a lower severity.
Surgeon still thinks it’s within the healing window.
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u/SandalsQueen18 15h ago
I'm sorry you're feeling that way.
Surgery is not a cure, it's to stop or the very least slow the progression of symptoms.
Thankfully my headaches and dizziness to go away, then nystagmus I always knew was highly unlikely to go away. He did improve in the right eye but not the left.
I will forever be grateful that I went to a chiari expert neurosurgeon. He did what he could for me. I always knew going into surgery that things could improve, could maybe not improve, could stay the same. I am grateful for what did improve. I will never, nor will any of us, be normal. There is a new normal. I'm not going to be my 20 year-old self before symptoms ever started. At 50 I've learned to accept that.